Thursday 1st October 2015
A Rather Frustrating Day
Although I continue to feel a lot better than I have at the same stage in previous cycles, today I felt very unfocused and foggy, and very unsteady on my feet. My hubby reminded me that today was our friends’ diamond wedding party. I had originally thought I would not be well enough to attend, it being less than a week after a treatment, but with the reduced dose and feeling so much better, I decided to go. I had actually forgotten when it was, and had not made them a card, so I got myself together to do this, and spent a most frustrating morning making so many mistakes because my brain had gone AWOL, and not being able to find half my stuff, etc. etc. I got it done in the end and it did get a bit easier as time went on.
After a late lunch I rested for a while and then we set off. It was a lovely party and the card was very much appreciated. I did feel a lot better later and spent the evening on the recliner relaxing.
I am sure there are going to be days when I feel less good, but compared with how I’ve felt before, today was still a great improvement, so I must hang onto that!
We are now into October! We are now into serious countdown time and I have accordingly reduced the calendar to one month! A fortnight to go till my final treatment.
Friday 2nd October 2015
Very Tired Again Today
As I anticipated after rather overdoing things yesterday, not such a good day today. I did a bit of pottering about in the office in the morning, and updated my blog (took the rest of the photos I needed for that) and then in the afternoon I rested. I had an awful headache in the evening which persisted until the next morning.
Countdown calendar for today:
A fortnight to go!
Saturday 3rd October 2015
An Outing, and More Rest
I was feeling a bit stir-crazy this morning, having spent so much time at home, and asked my hubby to take me out, so we went along the sea front and I enjoyed a beautiful sunny day and some fresh air, and we ended up having coffee in the sunshine. When we got back I crashed out on the recliner and went off into a deep sleep until lunch time! It’s amazing how just trundling around on my buggy completely wore me out. I may be better on the reduced dose, but certainly far from 100 percent.
I rested this afternoon, and am not pushing things. There will be plenty of time to get my life sorted out once I start to feel really better!
My countdown calendar for today.
Sunday 4th October 2015
Feeling Wiped Out Again
After our two pretty relaxing little outings over the past couple of days, I have had to have a sleep both times. I seem to be feeling pretty wiped out again despite the reduced dose, but at least the peripheral neuropathy is much better, apart from a few episodes after touching cold stuff, but I haven’t had to keep the gloves on all the time.
I have to accept that even with the reduced dose, I am feeling the effects as there is still quite a lot of chemo in my system. I have to keep on going with the flow and looking forward to the time after the final treatment, when I can really start to recover properly. It won’t be long now.
Here’s my countdown calendar for today.
Monday 5th October 2015
Zombie Day
Surprisingly, on the reduced dose, and after feeling noticeably better initially, I have been feeling increasingly rough again over the past couple of days. I thought I would try and catch up with some rest this morning, so I stayed in bed until lunch time, alternately reading and sleeping, and once I was up, I had another long sleep this afternoon.
In the brain department I feel like a total zombie. I can’t concentrate, and keep forgetting things, and seem to be in a complete fog. No point fighting it – just got to go with the flow as usual, and hope it passes off sooner rather than later!
Here’s my countdown calendar for today. I’m now about half way through this cycle.
Only ten days to go till it’s all finished!
Tuesday 6th October 2015
Slightly Better Today
I am feeling slightly better today and only had a short sleep in the early afternoon. I still feel wiped out, still have the horrible taste in my mouth, and my appetite isn’t up to much, but apart from that I’m not too bad. The peripheral neuropathy is definitely improved on the reduced dose, which was the object of the exercise, so I suppose I can’t complain about the rest! I am hoping to feel sufficiently better tomorrow to be able to do some things again.
Here’s my countdown calendar for today.
Down to single figures!!
Wednesday 7th October 2015
Much the Same
Not much improvement today. I have had another daytime sleep. I did manage to spend a bit of time in the studio in the morning cutting some card but became too shaky and exhausted to do much and had to come down to rest. This is going to take time, and I have to be patient…
My countdown calendar for today.
Just over a week to go.
Thursday 8th October 2015
Slightly Better
Well, I did manage to achieve something today – not what I wanted, but it’s a start! I managed to complete last month’s accounts. It took me considerably longer than I’d hoped, because I found several mistakes I’d made in the most recent months (evidence of chemo brain in operation) which had to be put right, but I got there in the end. Then I had to come down and rest again. I had a short sleep only, and watched some TV and went on the computer. My hubby was out all day.
My countdown calendar for today.
Only a week to go!
Friday 9th October 2015
Much Better Today
I’m definitely feeling better again today as I enter the final week of the chemo cycle. I managed to do some studio time this morning and then rested this afternoon but I haven’t had a daytime sleep at all today, so that’s progress. I have plans for more time in the studio tomorrow, all being well, but I’m certainly not pushing things.
Here is my countdown calendar for today. My final treatment is a week today! Where has the time gone? Half way through, it certainly wasn’t going quickly enough for me! I’m not normally one to wish my life away, but I was certainly wishing it away at that stage. Someone said to me at that time that once the half-way mark had been reached, the time would gallop away – I wasn’t convinced, because it was all so awful, but she was right! Here we are with less than a week to go before it’s all over.
I want to make the final week of this cycle count, and I need to be doing some creative stuff. We’ve got a busy week next week with various people visiting, but I should be able to put some time in, especially over the weekend.
Saturday 10th October 2015
A Lot Better Today
As the third week of the cycle begins, I am feeling very much better, and managed to put in some quality time in my studio this morning, sorting out my paper stash and making three cards from my recent drawings. This gave me a real boost and a great sense of achievement.
We’ve got a busy week ahead with something happening every day from Monday onwards, so I expect I shall be extra tired after my next and final chemo! It will be worth it, though – we are seeing various family members and some old friends, too, and having some outings.
Another lovely boost today – I had a blog comment from Shaz, who has been incommunicado for several weeks following her major rectal cancer surgery. Although her hubby has been doing stirling work keeping all her friends up to date with his special blog about her progress, it is very, very good indeed to hear from the girl herself, and to know she is back in the land of the living!! We all wish her well and hope she will soon be well enough to be sent home, and that her recovery is well under way. She has been such a support to me through my own long journey.
Here’s my countdown calendar for today. Look how few dates still need to be crossed off! Only 5 days to go!
Sunday 11th October 2015
Feeling Pretty Good Today!
I’m really enjoying the benefits of week 3 of the chemo cycle now, feeling tons better. I had a good session in the studio this morning experimenting with my new Brusho paints. When I came down for lunch I suddenly crashed and felt very exhausted, and although I felt rather sleepy, I didn’t actually sleep, and watched TV from the recliner all afternoon, and did a bit on the computer. It’s going to take a while for my stamina levels to improve, once the chemo is finished.
I’ve still got a pretty nasty taste in my mouth but it doesn’t seem to be there all the time, which is good. The peripheral neuropathy is now much better, too, and it certainly hasn’t been so bad in the early days of this cycle, so the main reason for the reduction in the dose has proved itself. Dr. Lo is going to be pleased, I am sure. It also means that it is a lot less likely that this effect will become permanent, which is a relief.
We’ve got a busy week ahead, with visits to and from family, and some old friends coming down to visit on Tuesday. Each day something is happening, with my bloods and oncology appointments on Thursday, and of course, my final chemo on Friday. I can’t believe that we are into serious countdown mode now, with only four more days to go!
Goodness, we’re down on the bottom line of the calendar now!
This evening I have been looking at recipes online, and anticipating the time when I shall start cooking again, in a few weeks’ time, after I get over the effects of the final chemo. My hubby has done very well for us both over the past months, but we have been living off ready meals, and however delicious they may be, they do not compare with home cooking and one doesn’t have so much control over what goes into the meal. This evening I have been looking at recipes for sweet potatoes, which I am ashamed to say I have never cooked in my life! I have eaten them when eating out and loved them, and I have discovered how healthy they are. I am planning on cooking some more adventurous and tasty (and hopefully healthier and lower-calorie) meals for us both to enjoy, and to be able to pamper my hubby a bit and give him a break from all the hard work he has done on my behalf since I’ve been ill.
I have also been thinking that even though we’ve had a lot of ready meals, my hubby has also brought home some different things for us to eat, that we weren’t having before, and much of this was as a result of him actually doing the physical shopping in the real supermarket, rather than what I was doing before, which was almost exclusively online. I tended to stick to whatever was in my “favourites” list and didn’t spend a lot of time browsing the virtual aisles. I think maybe once in a while if he were to take me shopping to Sainsbury’s or wherever, I would be able to discover some new things for myself, and it would keep my ideas fresh and varied.
I can’t wait to get back into my kitchen now, and get it sorted, and organise my store cupboards again, and see what we need to stock up on. It all needs a good clean-up too! Not that I’m intending to do it all at once and overtire myself, but it will be nice to get on top of it all again.
Monday 12th October 2015
Really Enjoying the Benefits of Week 3!
I so appreciate feeling so well towards the end of each chemo cycle, and week 3 is the week when I feel sufficiently well to do more things. I put in more studio time this morning and mounted the Brusho paintings I did yesterday onto cards, and was able to give our sister-in-law one tonight which she was pleased with. We had such a lovely evening with them, and I am so glad her birthday coincided with a good week for me.
Looking forward to our other visitors this week and the fun we are going to have with them.
I still can’t believe how fast the time is going, and how quickly the date of my final chemo is approaching. We are into serious countdown time now!
Only three days to go!!!
Tuesday 13th October 2015
A Busy Day
Another busy day – we had friends visiting. They arrived mid-morning and we all went out for lunch together on Babbacombe sea front, in our favourite café. It was a beautiful sunny day but the wind made it too cold to sit outside to eat. Afterwards we walked along the sea front and the sea and sky were so blue! A perfect autumn day.
They left around tea time and then I had a sleep. Although I am very much better, and being with people gives me a sufficient adrenaline rush to keep me going, when it’s over I do tend to crash a bit! Worth it, though. We had a lovely time with friends whom we had not seen for quite a few years.
My countdown calendar for today.
Only two days to go! It hardly seems possible.
Wednesday 14th October 2015
Another Busy Day!
This week seems to be full of visits and visitors! Another family visit today, for lunch. I did manage to put in some studio time, and in the evening I actually managed to do some colouring! Soon I shall be doing this every day without a second thought.
I so appreciate the third week of each chemo cycle, when I feel human again, and feel well enough to enjoy life and do some of the things I enjoy best. The poorly weeks make this final week of the cycle all the more precious. I hope that once the chemo is finished, I will never take for granted how well I feel, but rejoice in it and count my blessings daily.
My countdown calendar for today shows that there is only one full day remaining until my final chemo treatment. Can I really say, “The day after tomorrow…” How quickly the time has flown!
Thursday 15th October 2015
Oncology Appointment
Today, being the day before a treatment, I went in to the hospital to have bloods taken as usual, on the Ricky Grant Day Unit. After they had done this, they gave me my MRSA swab kit (which I usually get given at the previous treatment but for some reason this wasn’t done – I can take them in tomorrow when I go for chemo), some more Ametop local anaesthetic for the port in readiness for tomorrow, together with some more dressings for that, and another pot of cow cream! I come home loaded up with stuff…
We then discussed when I will next need to come in. I was told that the port requires flushing every six weeks if it is not used. Up until now it has had regular flushings every three weeks when I have my treatments. They will leave it in place for now, at least until after my CT scan and after the oncologist is happy with my blood results in the coming weeks, just in case it is needed again. I am sure I won’t be needing any further chemo, but it would be silly to remove the port until they are completely sure. My appointment for the flushing is six weeks on from tomorrow’s treatment, i.e. Friday 27th November.
After this, we went down to oncology. Dr. Lo and her registrar, Dr. Dyke, were both working in the clinic today, and we saw Dr. Dyke. She is so nice! So is Dr. Lo. I don’t know where they find so many absolutely lovely people but Torbay Hospital is full of them!
She asked how I’d got on since I was last there, and I told her that the first week after the treatment had been good, and that I was very pleased that the reduced dose seemed to make such a marked difference in how I was feeling, and how I had then crashed in week 2, but by week 3 (this week) I was considerably better. Asking about the peripheral neuropathy, she was pleased that I was able to report that the reduced dose had reduced this considerably, which was the object of the exercise. I told her that I had not had to wear the gloves nearly as much as usual, and although it was still there in the first two weeks, it was very much better than it had been before, and by this week it was virtually gone. This is good news, because it looks as if it will clear up completely once the last traces of chemo have left my system. She said that they proposed keeping the dose for the final treatment the same as last time, i.e. at 50 percent of the original dose, and this pleased me greatly.
She asked if I had seen Mr. Pullan (my surgeon) yet – she had fixed the appointment for me when I last saw her, when I was concerned about the bloody mucous discharge I was experiencing from what remains of my rectum. I told her I had an appointment for 29th October. I said that the problem was largely resolved now, but I had intermittent bouts of discharge, but they had not had blood present, or if they had, it was minimal. She agreed that it could be an effect of the chemo, breaking down the walls of any already delicate blood vessels in that area, but it would be good to see Mr. Pullan and be reassured. There is a possibility that there may be some colitis remaining in that area and I may need to go back on my medication for that. We shall see.
She said that I should come back and see them in six weeks’ time, which would be on Monday 30th November. I told her I had an appointment on Friday 27th November at Ricky Grant for port flushing, and she said they could take blood then, and the result would be back in time for my appointment with them the following Monday. She also said that I would get an appointment for my CT scan, to take place some time before that, so that that result would also be back with them before I returned to oncology. These results together would point the way forward for what needs to be done next – hopefully nothing! – just blood tests every now and then, and maybe more scans, over the next five years, to make sure I remain in the clear.
It felt very strange, both on Ricky Grant and in oncology today, to be talking about appointments in six weeks’ time, rather than planning for the next treatment! The final one tomorrow marks the end of phase 3 (phase 1 being preparation for, and having, the surgery; phase 2 being learning how to manage Kermit, my stoma, and phase 3 being the chemo), and after I have recovered from that, we can move forward into the uncharted waters of my New Life – hopefully a cancer-free one! I have every confidence that this will indeed be the case, and the professionals share that opinion, too, but are taking the right precautions and keeping an eye on me, to make sure.
My final countdown calendar! I simply cannot believe that we are now down to “0” after counting down for so many weeks! The final stages of this chemo journey have simply galloped away, and suddenly I am facing the final hurdle. After this, my new life begins, and I can concentrate on getting really well again, and picking up the threads of my life.
Friday 16th October 2015
I HAVE FINISHED MY CHEMO!
I keep being quite overwhelmed by the fact that today I had my final chemo session! I wonder when I am going to wake up and find that it is not true and that I still have loads to get through… Since session 5 (after which I got really fed up with feeling ill all the time, and wondered if I’d ever get through it) the time has simply raced away, and suddenly I was facing the final session.
I arrived in time for a 12 noon appointment, but because they were so busy, I was kept waiting until nearly 1 p.m. In the end this was a blessing in disguise (more later). I was taken in and the gripper needle fitted into the port, and I had my usual flushing, steroid injection and anti-sickness medication infused (ondansetron) before the final bag of oxaliplatin was hooked up, and I was trundled off to the treatment bay. I discussed my 6-week appointment with the nurse, mentioning that Dr. Lo wanted me to have bloods taken then as well as the port flush, to be ready for my appointment with her the following Monday. I also handed in my MRSA swabs and collected my ondansetron and steroid tablets to be taken over the next few days.
When I eventually got into the treatment bay, I began by eating the lovely packed lunch my hubby had so kindly made for me, and continued through the afternoon with a combination of a bit of colouring for my Florabunda card project, reading my book, and doing part of a puzzle, and chatting with some really lovely people. One lady told me she’d recently had a colostomy and wasn’t dealing well with it. I had a chat with her and said that how she felt did not alter the fact of it being part of her life, and that a change of attitude would really help her. I shared my story, and also gave her quite a few hints that I have learnt along the way. I got some nice feedback from one of the nurses later, that this lady had found the conversation very helpful. I shall be very happy if any of my experiences over the past year can be used to help others even in a small way.
The atmosphere is so friendly on the unit and even people whose cancer is terminal have the most amazing upbeat attitude and are full of smiles, and the resolution to make the absolute best of whatever life remains to them, and everyone emphasises the importance of family, of love, of appreciating each and every day, of counting one’s blessings – all those things that money cannot buy, and which are of infinite worth. All attitudes and thoughts I have been cultivating over the past months! The nurses are also all amazing, and the clerical staff too – there is a lot of laughter in what is a happy place, despite the seriousness of its raison d’etre. Logically, it should be a place of doom and gloom and depression, but the resilience of the human spirit, and love and caring, make it quite otherwise.
My hubby arrived while I still had about a quarter of an hour of chemo infusion to go, and then I saw the machine count down from one minute to zero, and my final beeps began, and I raised all my imaginary flags! Laura, the nurse who had been looking after me today, came and did my final flush and disconnected the needle from the port, and I was free to go.
By this time, because of the delay at the start, all the other patients had gone, and the nurses were not all rushing around being ultra-busy, so I got my phone out and said I wanted some photos of me with them all. They were all very enthusiastic about the idea, apart from one who wailed, “I haven’t got any makeup on!!” in very good humour, and was instantly shouted down, in equally good humour and a lot of laughter (“We haven’t got time to wait two hours…” “I’ve got some permanent markers in my locker…” etc. etc.!!) We called Emma, my favourite desk clerk of the team who work on reception, and she came and joined in the photo shoot too.
I am a dunce when it comes to mobile phones. I recently inherited my brother-in-law’s old Samsung Galaxy smart phone and have not kept up the pay-as-you-go – I really need to get that sorted – but lots of other features work on it, including the camera. I hadn’t taken my normal camera because the battery was on charge, so I decided to take a risk and use the phone. My hubby took some photos of the group, and I took several of the unit. Later, I had an awful job trying to transfer them to my computer and eventually managed to do it via the USB cable, once I’d worked out that you had to alter some settings on the phone itself before my file manager software would recognise the camera, and allow me to drag and drop the photos across.
Here are the photos I took of the Ricky Grant Day unit (looking very strange with no patients!) – you will see what a lovely place it is, and how they have gone to a lot of trouble to introduce restful pastel shades, and a lot of pale wood panelling, to make it look less clinical. The first photo shows the corner of the reception desk, looking down the further corridor, which has doors off to the right with separate treatment rooms, some of which have couches in them for people to rest on while they have their chemo – I used one of these for my first session when I was still a bit woozy from the anaesthetic when I had the port fitted. You can see the IV poles on the left, which hold the bags of chemo and other medications for infusion, and blood for those having blood transfusions.
Looking back the other way from reception, you can see the wide corridor that also serves as the waiting area. As usual in every hospital waiting room I have ever been in, there are NO spaces to park wheelchairs, with the result that I ALWAYS feel as if I’m in the way! I have written this on numerous feedback sheets but so far nothing has happened to remedy this – considering how many disabled people attend hospitals, I think this is quite an oversight. On the far right of the foreground of this photo you can see the large rubbish bin, the space in front of which has become my favoured parking place! (Make of that what you will, lol!)
Behind the seats in the waiting area are two wide gaps giving access into the two treatment bays. The next picture shows the first one, where I have always gone. On the right, between the windows, you can see a low dividing wall which separates the two areas. The second area has a wide-screen TV on the wall. It looks very odd with no patients sitting in the chairs (you can see one of the recliners in the corner – my preferred seating as they are very comfortable, and the other chairs certainly are not – at least for me!), and the occasional tables which have jars of sweets for people to suck to take away the horrible taste of the chemo. Along the wall, on the white strip, are numerous power points to plug in the drip machines, which will also run on battery power for a limited time to enable people to trundle off to the loo, or get a cup of coffee. (I always had to have someone to push my IV pole as I need both hands to propel my wheelchair.)
This is the area that so impressed me on my first visit to the unit, when I had my “New Patient Talk”” appointment where everything was explained to me). I saw all those people sitting there, attached to their machines which make a gentle, rather hypnotic sound, and all I could think of was that they resembled a herd of cows in the milking parlour, patiently chewing the cud while attached to their machines!! When I went in for my appointment they gave me various things to help with side effects, including a pot of “Udderly Smooth” cream for my hands and feet – originally designed to put on cows’ udders, and the farmers so liked it on their hands that it began to be marketed for humans too – but they retained the name, and the black-and-white cow hide print on the jars. I was convinced that I would come out at the end of the treatment transformed into a cow after all that!
So this is the milking parlour. I am now well and truly one of the herd.
Here is Emma, my favourite reception clerk, at the desk. If you look carefully it looks as if she’s got three arms. This is because one of the nurses was hiding behind her, unbeknownst to her, and raising two fingers above her head, which you can just see if you look very carefully! Lol!
[Emma has subsequently left the unit and now works in another department in the NHS, in town, away from the hospital. I really missed seeing her on visits to Ricky Grant after she’d gone, and I made a special effort to go in just before she left, to say goodbye. She is so lovely and I am sure her presence is very much missed on the unit.]
Finally, here is the group shot my hubby took. I am leaning back with my arms around the two nearest to me, and I look so FAT!!! (OK, I AM fat, but not as fat as I used to be!) You can see how happy everybody looks.
I was sorry that several of the lovely nurses who have looked after me over the past six months were not present today. I shall be emailing one of them with the photo so that she can pass it on to the others. They were all exceptional people, so friendly and encouraging and helpful, and efficient in their work – so sad that they are so busy because there is so much cancer about. They are unfailingly cheerful, remember our names, and give us the very best treatment. As we were leaving, Emma gave me a questionnaire to fill in about what I felt about my treatment, and I gave them a five-star rating on every count, and in the comments section, said that if chemo could ever be considered to be fun, it would be, given the nature of the truly wonderful staff on the unit, and that they all deserved a gold medal with diamonds on it. When I started writing, they all started chipping in with remarks like, “I (Emma) am the most efficient clerk on the unit,” and “I am the best nurse,” and “I am the most beautiful nurse” etc. etc.!!! Eventually I cried out “Stop! If I start writing that I’ll forget someone and they will get upset” lol! We had such a good laugh.
Although I am absolutely 100 percent delighted that my chemo is now finished, I am going to miss going to Ricky Grant and receiving such loving and caring treatment. I shall be going back, though – I have an appointment in six weeks’ time for port flushing and bloods, and will probably be returning in the future for further blood tests until I am guaranteed clear of the cancer, so I shall be seeing them all periodically, just not on such a regular basis.
I also want to make more things for the chemo people. I have been thinking about this, as I simply love to give things away. There is a box on the reception desk with cards in it that people have made, and I could certainly do some for them in my own style, and I could make other items too. I have gained so much from my six months’ attendance on the unit and it would be a nice way to put something back, and also an opportunity to call in every now and then and catch up with everybody. [I have subsequently been taking in home baking to share with people having their chemo.]
My hubby took me home after this, and I really wasn’t feeling too bad. I managed to eat a nice evening meal, and while I do feel slightly peculiar, and have had a little peripheral neuropathy in my hands after touching something cold, it is not there in a big way and I haven’t resorted to my gloves. Like last time, I may find that week 1 is pretty good, and I may crash again in week 2, but we shall see.
I think that already, the effects are less severe because my whole attitude has changed now that the treatment has finished. I am feeling so good that phase 3 of my journey is now at an end (phase 1 being preparation for surgery and then the actual operation and hospital stay; phase 2 being learning to manage Kermit, my stoma, and phase 3 being the chemo). Phase 4 can now be called “the recovery phase” when I can really concentrate on getting well. I am convinced that I am going to be OK now; they are all very optimistic at the hospital that all the cancer has gone. I shall do my best with eating the right foods to help my body expel the residue of toxic chemicals from my system, and my positive attitude and determination will also help me along the way.
What a journey this has been! Phase 4 will include the CT scan and further blood tests in the next 4-6 weeks, and then ongoing for the next five years. At some point I shall have to go in to have the port removed, but they will most likely leave it in for a while until they are sure it won’t be needed any more, and this means I shall have to return to the Ricky Grant unit for it to be flushed every six weeks if it has not been used. However, during phase 4, I shall be concentrating on getting my life back on track at home, and gradually taking on my previous roles on the domestic front, relying on my hubby on the days when I am feeling not so good – he has had plenty of practice and I am sure he won’t mind stepping into the breach when necessary. I am not intending to rush into doing too much and setting myself back, but I shall be sensible and continue to listen to my body.
Amazingly, today on my main blog, the “Daily Blessing” in my side bar has come up with this:
Friday October 16, 2015
Today’s Verse:
“Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus.” (Philippians 3:13-14, KJV)
How appropriate.
Saturday 24th October 2015
Week 2 of my Final Cycle
I realise I haven’t updated this blog page for over a week! After the final treatment, I really didn’t feel too bad during week 1 of the cycle, which was what happened after the penultimate treatment, but then crashed at the beginning of week 2. For the past couple of days I’ve been feeling really rough again. However, I know from experience that this will only last until the beginning of next week, when I shall start to pick up and feel a lot better. I’m already starting to feel a bit better this evening than earlier in the day. I had a good rest in bed for half the morning and haven’t pushed it today, but just rested on the recliner. This evening I even managed to do a bit of drawing.
The knowledge that I have not got to face another treatment just when I am feeling better, and have to face the prospect of being cast down again, is really, really helping, too! As soon as I am past the day when I would have been having another treatment had I not finished, I know I will make real progress towards getting back to my “normal” state of health (whatever that is, with the M.E.!)
I had a letter on Friday from the hospital, with an appointment for my CT scan, which will be in the afternoon of Thursday 19th November, which is good. The results will be with the oncologist by the end of the month, when I am seeing her again.
Kermit is a bit upset with me at the moment and playing up a bit and being very over-active, but I keep reassuring him it’s only the chemo and he will start to feel better in a few days! Generally speaking he’s been pretty good throughout. At the beginning of the chemo he produced a great deal of very runny output, but these days it tends to be on the thick side, with an awful lot of gas, and my tummy has been terribly gurgly and noisy. I’m just glad I’m not well enough to be out in public at the moment because I’m sure I’d be getting some funny looks!
Today someone on one of the forums I am on told me that life had given me lemons, and I had made champagne out of them! Wasn’t that a lovely thing to say? So, I raise my glass of champagne to you all – everyone who has supported me throughout my journey, and are continuing to do so – and say, “Bottoms Up!” Sorry about that… couldn’t resist.
Onwards and upwards now!
Sunday 25th October 2015
Another Not-So-Good Day
Today I felt quite rotten. Very wiped out, and my balance is very poor, and the peripheral neuropathy was back with a vengeance, necessitating the gloves again… Also, my hands started to seize up again, which is an effect I haven’t had since about mid-way through my treatment. This morning I felt a bit nauseous but this was dealt with by my pre-lunch anti-sickness pills (domperidone). I have eaten well today, but have had a horrible taste in my mouth all day. I went to sleep this afternoon while my hubby was out and he came home to find me in the semi-darkness on the recliner!
Chemo brain… Last night we were supposed to change the clocks. I completely forgot about it. This wouldn’t be the first time, of course, but this time I didn’t realise until this evening when my hubby made a chance remark about it! Of course, he remembered, and didn’t say a word to me, and took himself off to church at the correct time, and this evening he told me (very superior as always lol!!) that some people had turned up an hour late for the service! Anyway, I got through the whole day not realising I was an hour out of sync with everyone else, didn’t notice that it was a lot darker than usual at tea time, and didn’t even bat an eyelid having meals at the wrong time. I simply didn’t notice! Honestly, I am not fit to be let out on my own at the moment! It’s a good thing I’ve got my lovely hubby looking after me (even if he doesn’t tell me anything!) or they’d probably lock me up.
Anyway, my time over the past few days hasn’t been entirely wasted, however I might be feeling. I’ve managed to do some drawing, designed a leaflet, and looked up some stuff on the Internet that I needed to find out.
I’ll be over this soon. It can’t come soon enough!
Tuesday 27th October 2015
Week 2 of Final Chemo Cycle, and Forthcoming Appointments
I continue to feel wiped out and suffer the ongoing effects of my final chemo session. It’s strange how with the reduced dose, this seems to have been delayed until the second week, rather than being at the beginning as previously. All I can think is that it is taking longer to come out and reveal itself.
Very wiped out, no energy, peripheral neuropathy, horrible taste in my mouth, etc. etc. Kermit continues to be very busy producing a lot of output and gas, and making me constantly aware of his presence, which he doesn’t usually do.
I have to remind myself, “Don’t fight the chemo, fight the cancer!” and if I am feeling it, it means it is still doing its stuff. As it continues to mop up any rogue cancer cells there may be floating around my system, it is also gobbling away at fast-growing non-cancerous cells, which is why I feel so poorly. This is the final time, and I must take courage from that! I am now half way through the three weeks, and can anticipate starting to feel better in two or three days’ time, so I have to hang in there, and remain positive.
On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn’t hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.
The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark – not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!
I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.
When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I’m only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.
Even though I have finished my chemo, the appointments keep on coming! My CT scan is on Thursday 19th November, and then I’ve got bloods and port flush at Ricky Grant on 27th, and my oncology appointment with Dr. Lo on 30th November, when the results of the scan should be back, and hopefully I will be given the all clear. Until they remove the port, I will have to attend Ricky Grant to have it flushed every six weeks. At least I am not having two or three appointments every week these days, which eases the burden on my hubby a bit.
Thursday 29th October 2015
Two Hospital Appointments
This morning my hubby took me in for two appointments at Hutchings Ward Outpatients on Level 8 – my old stamping ground where I always saw Dr. Johnson, my gastroenterologist, before my operation to remove my colon, and subsequently for stoma clinic appointments, and where Mr. Pullan, my surgeon, has his outpatient clinic.
I was due to see Mr. Pullan this morning but apparently he was away, so I saw his registrar instead, who was equally charming and helpful. I told him about the rectal discharge problem I’ve been having, and he said he’d like to take a look. He said there was a fair amount of gunk in there, including some pus, which I didn’t like the sound of. After poking around with his finger, he asked the nurse to hand him a proctoscope and he managed to get quite a bit of the stuff out out, but was unable to see clearly what was going on because it was messy in there. He couldn’t feel any lumps or anything, so it seems as if there is no ulcerative colitis or anything else going on. However, he did take it seriously and said he would be talking to Mr. Pullan about it, and it may be necessary for me to come in again for a more thorough examination of the area. I told him how painful it was, using the Micralax mini-enemas, and also the glycerin suppositories, and he said it was obviously quite sensitive in there. He agreed that the bleeding could have been been brought on by the chemo, which does affect the delicate peripheral blood vessels and mucous membranes of the body. While he agreed that enemas may be the way forward, it wasn’t necessarily very practical if it is so sensitive, and the proctoscope was the best way to clear it, but obviously I could not do this at home.
He said the area was clearly quite sensitive, and this was fairly common in view of all that had been done in the rectal area. He said that Mr. Pullan had done a very nice job, and the rectal stump was of minimal length – only about 1.5 inches. I think it is surprising just how much stuff comes out if it is that short! I asked how long I could expect to have mucous discharge and he said that it could go on permanently because the mucous membrane lining the rectum and colon produce mucus to aid the passage of stool, and normally one would not notice this as it would come out when one opened one’s bowels, but once this was no longer happening, the mucus would go on being produced and would be more noticeable. However, it may diminish with time; presumably the body starts to recognise that it is no longer required. Some people have a lot of trouble with mucous discharge, while others are not really troubled by it.
I mentioned to him the intermittent pain I had had in the peristomal area and my lower abdomen. He had a look at Kermit through the viewing window in the bag and asked if all was well there, which I confirmed it was, and then he gently palpated my abdomen and said there was no sign of a hernia, which was reassuring. People with stomas are more at risk of developing hernias because the abdominal muscles have been compromised with the formation of an opening through the abdominal wall, and it is important to guard against the formation of a hernia if at all possible – prevention is better than cure! I told him I was due to see the stoma nurse immediately after seeing him, and was going to discuss support garments. He said he was pleased at how the operation wound was looking and how well it had healed.
He said the pain was probably due to the formation of scar tissue in the area post-operatively. He said that there was a lot going on in that area because I’d already had a hysterectomy, and there could well be adhesions which might cause some discomfort, but it was nothing to worry about. I have noticed that the pain tends to be present only when I haven’t got anything holding the bag in place, such as the wrap; there is a pulling sensation, so I think the support underwear is going to help with this as well.
He went to do some paperwork and came back and said I’d be receiving an appointment for my CT scan soon – I told him I’d already received the appointment for this, on 19th November, so he said he’d cancel that request, and was glad that it had come through already.
All in all it was a very satisfactory appointment, and I came away reassured.
We then went in to see the stoma nurse.
As a result of these two appointments, I now have another, and possibly two, appointments forthcoming – one with the girdle-fitting lady for hernia prevention, and a possible further appointment with Mr. Pullan. They are certainly continuing to look after me very well!
As far as how I am currently feeling is concerned, I’ve definitely felt better today. OK, I did have a sleep this afternoon, but I think that was as much to do with not having slept well last night, and also being out all morning, as much as it being chemo fatigue. Tomorrow it will be a fortnight since my final chemo (where on earth do the days go, so quickly?) and I should definitely be picking up as I enter week 3 of the cycle. Soon all the horrible effects will be a thing of the past!
Comments from my old blog
Kelly
13 October 2015 at 00:08
So happy to hear you are seeing a light at the end of the chemo tunnel. You sound ‘wonderful’ and excited. Warms my heart to hear your smile. Continued hugs and support. Kel
glitterandglue
19 October 2015 at 11:18
Wey hey, Shoshi!! Done it! Well done to the pair of you. It has been a gruelling time – but now, as you say, you can begin phase 4. Have been prying for you both right through your treatment. I will reply to your email – everything’s taking a long while currently, as J ha been in and out of hospital…. but I’ll get there – just be warned – it may carry a government health warning ‘cos of its length (when you get it!)!!!!! Take care. God bless. Margaret and John
Nannie4
20 October 2015 at 08:52
Good for you, Shoshi! Here’s hoping that the next part of this journey will be much smoother. You have been a trooper through it all!
