Tuesday 2nd June 2015
Stoma Clinic Appointment
On Thursday 28th May I had my final regular appointment at the stoma clinic – up until now I have been attending fortnightly, and then this last appointment was three weeks on from the previous one. In the early days I was having to ask for emergency appointments in between, because of problems, but now that things have finally settled down and I am using the right bag to suit me, I do not have to attend again for the next three months. I am very pleased to have reached this stage at last, after a lot of teething problems (which I think everybody goes through in the early stages), because it’s good to have them behind me as I start my chemo. The chemo increases the stoma output and makes it a lot more liquid too, and I wouldn’t want to be dealing with this if I was still experiencing leaks and finding stoma management difficult.
At this appointment, the nurse discussed setting up my prescription for me. She told me the supply company would phone me in the next few days, and that she would send my prescription to my GP. After this, when I am beginning to run low on anything, I just have to contact the supply company direct and let them know what I need, and they will get the prescription from my GP, and in due course my parcel will arrive. Easy peasy.
She told me that in order to save the NHS money, my choices may be fairly limited. However, I know many people who are able to get both adhesive remover spray and wipes, and not just a choice of one, so it may be possible to ask for it and see what my GP will allow. If they say I can’t have certain things, so be it.
She has also ordered a couple of pairs of pants for me, and a wrap – I should be able to get more of these in due course – to hold the bag in place more securely and to stop bulges showing as the bag fills. I have found that it flops about a bit in bed, and a wrap will hold it in place. These will be sent from a different company so won’t arrive with my first parcel of supplies.
The nurse put a fresh bag on for me, and said that I had cut the hole too small – if there is no room for movement, one can develop granulomas which can bleed a lot and be a nuisance. However, as she cut it and applied it, the hole looked a lot bigger than what I had cut and I was pretty sure it was too big. She said she would send the template to the company and they would pre-cut my bags for me.
Over the next few hours, my worst fears were realised, and I could feel the itching and pain beginning again, and I knew the hole was too large. I left the bag in place until the following day and when I changed it, I was glad I’d caught it in time – the skin was beginning to redden, but it was not yet broken. I cut a fresh bag to the smaller size, and phoned the nurse to tell her what had happened. I asked that she phone the suppliers and ask them to send my first batch uncut, and I would forward my template to them in due course, and she was absolutely fine with this.
It was a very satisfactory appointment.
Yesterday the company phoned me and we discussed this, and other matters.
Ostomy Open Day
Until a few months ago, I had no idea that such a thing as an ostomy open day could even exist! I picked up a flier at the hospital advertising this event, which took place at Newton Abbot Racecourse – strange venue, I thought, not realising that they have a conference centre there.
It was a very interesting and exciting event. I was delighted to see all the stoma nurses there from Torbay Hospital, and was pleased to be able to speak to the nurse I saw the other day, to clarify a point I forgot to ask her. She said they had organised the event, and all the companies represented there had dealings with the hospital, and I could choose whatever samples I liked, and give them a try.
Coffee was served, and there was someone doing manicures, and plenty of people attended, so it was a lively event. It was particularly nice to be able to see a lot of the products “in the flesh” that I had only seen before online, and to talk to the various representatives and discuss different options.
We came home laden with bags of samples and fun freebies, and I spent quite a long time sorting through them and photographing them. Eventually I shall be reviewing and comparing the various products, once I have had a chance to try them all, but for now I will show photographs of groups of items from the various companies.
CD Medical
PeelEasy adhesive remover spray, which has a revolutionary propellant system with the liquid in a bag inside the tin, and no propellant gases, which means the whole tin can be filled with the liquid. Also, it will spray whatever way up the tin is held. Also, PeelEasy adhesive remover wipes. I find that using the spray to remove the stoma bag usually leaves a little adhesive residue on the skin, and spraying onto a tissue to remove this is not as effective as using a wipe.
Emollin emolient spray for dry or irritated skin – not for use in the peristomal area, but for elsewhere on the body; CliniFilm barrier spray and wipes.
Colostomy Association
A couple of issues of this organisation’s magazine. Glancing at these (I haven’t had a chance to read them yet) it looks as if many of the articles will apply to ileostomates too.
Convatec Mouldable Pouches
Unfortunately I wasn’t able to speak to the representative about this product. Leaflet and free post-it notes.
IA (Ileostomy and Internal Pouch Support Group)
They had a delightful colouring book for children, to help them through what must be a huge trauma for kids, having an ostomy. The book would also help a child deal with a parent or sibling undergoing surgery and learning to manage a bag.
IA Journal, and an invitation to an upcoming local meeting. Nice freebies: pen, lens cleaning cloth, notebook, post-it notes. Nice colour scheme for their product line!
Independence
Leaflets, and a nice sample pack which included their adhesive remover spray that had a clever top which you twist to open, so you don’t have to fiddle around with lids; lemon and lime fragranced odour eliminator spray which neutralises odours rather than masking them when you spray into the air; AcuBond strips (banana flanges); absorbent strips – when inserted into the bag, they convert liquid output into a gel; barrier wipes and adhesive remover wipes; leaflet about SilBond silicone glue. They also gave me a nice pen.
Miscellaneous Items
Gellymate absorption tablets from Peak Medical (another output thickening agent); Crohn’s and Colitis UK information and local event flier; Morform gelling agent from CliniMed (another output thickening agent); Charter Delivery Service leaflet from Coloplast and another nice pen; SecuriCare “Can’t Wait” card to use in a queue for the loo.
Opus Healthcare
Three different NaturCare odour eliminator sprays in Lightly Perfumed (a very pleasant scent reminiscent of 4711 Eau de Cologne), Unscented, and Zest Vibrant Citrus fragrances; LiftPlus Citrus adhesive remover spray.
Two small “pouch bridges” – little cubes of foam rubber with a self adhesive surface on one side – these are placed inside the bag to keep it open and allow the output to flow throughout the bag, to prevent pancaking. LiftPlus Citrus adhesive remover wipes; LaVera barrier cream with the most gorgeous lavender and aloe vera fragrance; SkinSafe barrier wipes; NaturCare IPD (In-Pouch Deodorant); DeoGel deodorising lubricating gel to help output flow throughout the bag, to prevent pancaking.
OstoMart
A large selection of samples: OstoPeel adhesive remover spray (blackcurrent fragrance); a sample box containing Astoa products (barrier cream, adhesive flange extenders large and small, mouldable adhesive ring seals thin and standard, and a leaflet); brochures and leaflets; OstoSorb odour neutralising absorbent gel; OstoFix security tape, OstoFix 80 and 40 security frames (I have had these supplied by the hospital and didn’t like their over-stickiness and the fact that they made my skin itch because they didn’t breathe); OstoClear adhesive remover wipes; OstoZyme odour-neutralising lubricating gel; OstoPeel adhesive remover wipes in raspberry, mint and apple fragrance; OstoGuard barrier cream; OstoGuard barrier wipe with lavender fragrance; OstoClenz no-rinse skin cleansing gel (for hands); another “Can’t Wait” card.
Pelican
It only occurred to me the other day the significance of the name – pelicans have pouches! Duh. They don’t keep poo in them, though. Leaflet regarding their delivery service; Release adhesive remover spray – I had some of this from the hospital when I first started, and it has a lovely fragrance of mint, with added Vitamin E for skin health; Release wipes; peg to keep one’s clothes out of the way; supermarket trolley token on a keyring.
I spent some time on the Salts MediLink stand, and they had several bags on display. This one particularly caught my eye; my friend Shaz has a great roll-up bag and I really wanted one of these, and this is the closest I’d seen to that. The gentleman on the stand gave it to me! Here is the bag rolled up and clipped shut.
Opened up, it reveals a number of zipped pockets, and a loop at one end, from which you can hang the unrolled bag to give easy access to all your supplies.
Here it is after I transferred all my travel stuff from my original bag:
This bag is going to be a lot more practical than the one I got from the hospital, nice as that one is. It is a fraction of the size and still holds all my stuff – with the exception of my Vanish laundry stain remover pot which I carry around in case I need to empty my bag in an emergency away from a loo, for example in the car – I have decided to keep that original bag in the car with the pot in it, along with my change of clothes. My hubby agrees this is a good idea, and it’s going to make a lot more room in the sling underneath my wheelchair which is now always full to bursting with all this gear!!
They gave me lots of nice freebies and leaflets about their MediLink supply service: anti-bacterial hand-cleansing gel – my hubby bought me some of this from the pharmacy recently and it has an awful sweet fragrance that I can’t abide! This one, however, is unperfumed (apart from an alcohol smell as you apply it, which disappears once it is dry), and it closely resembles the stuff in the wall pumps in the hospital. This is definitely my go-to stuff! Also another nice pen, a nail file, another lens cleaning cloth and a cool drinking water pouch! They also arranged to send me a decent pair of scissors with curved-up blades for cutting my bags until I get them sent ready-cut. This stand had some lovely stuff, and very friendly staff. They have a local office in Exeter. I have to admit they would be a nice supply company to deal with.
StomaWise
StomaWise is a UK-based charity which supports stoma awareness and provides OstoBears for children undergoing stoma surgery – each bear has a paediatric bag attached with Velcro over a lifelike little red stoma! The bag can be removed and replaced, for teaching purposes. They come dressed in pyjamas, like the children when they are in hospital, and being 16-inch bears, they are too large for Bear Factory or Build-a-Bear clothes (these bears are 14-inch bears) but StomaWise has an arrangement with Build Your Bear’s Wardrobe which makes clothes to fit these larger bears, and the children can get a 10% discount on the clothes when they register their OstoBear. I think OstoBears are the cutest idea, and I am sure they help a lot of children get through what is a traumatic enough experience for an adult.
Until recently, StomaWise had a forum on their very comprehensive information website, but this forum had to be closed because it was inundated with spam posts and they didn’t have enough volunteers to moderate the forum 24 hours a day. What a shame.
They also do pouch covers in a variety of designs. I made a donation into their tin and was given an ostomy awareness wrist band and another nice pen!
Suportx
I picked up some leaflets from this stand; they produce beautiful support underwear for ostomates, with a pocket built in to support one’s bag. The nurse has prescribed a wrap and two pairs of pants for me, and it will be interesting to see whether they come from this company. The quality seemed excellent.
Torbay Hospital
Finally, we picked up some leaflets from the Torbay Hospital stand. My hubby picked some up in my absence earlier, not realising I had these already – also I no longer require the low fibre/low residue diet one because I was only on this for a relatively short time post-op.
There were quite a few more stands from which I didn’t pick up any samples, freebies or info – these were mostly of limited interest to me.
At the end they called the raffle, and my hubby won two items! (He always wins…) He allowed me first choice, and I couldn’t resist this wonderful Moroccan Oil hair pack:
This stuff is frightfully expensive, smells divine, and works wonders on one’s hair! With his second winning ticket he chose a meal for two in a nice eatery – not sure when we’ll go there!
Good News on the Coloplast SenSura Mio Range!
I was thrilled to be able to speak to the rep on the Coloplast stand when she returned from lunch. I told her how much I liked their bags – my original bag in hospital was a SenSura. I am currently using Coloplast SenSura soft convex bags, and was very sorry to have to give up using their new SenSura Mio bag because my body was changing shape and I was getting leaks and required a convex flange; unfortunately the convex bag is only available in their original SenSura range, which is nice enough, but lacks the beautiful new cover of the Mio, and the slim, soft feel of that gorgeous bag. I wanted to ask if they were intending to bring the Mio out in the convex, and the lady assured me that they were – the company will be getting the first ones in the next two weeks, and they anticipate them being on the drug tariff (i.e. available on prescription) in the autumn. I am super-excited about this! I told the stoma nurse and she was pleased, and said I’d certainly be able to have these. The Coloplast rep said that until they were available on prescription she would be able to supply them to me free of charge, since this is a bag I definitely want, and they do not believe in depriving their customers of a bag if it is available but not yet on the tariff. This is great news! I shall be sharing it with my Camp Crappy [Inspire stoma forum] friends because there has been some discussion recently about this – loads of people seem to want these bags, and not surprisingly – they are gorgeous.
It was a very, very good day. I never would have thought I’d get excited about such things but these days it certainly floats my boat! I am glad I went in knowing quite a bit about the different products, thanks to several months on the Inspire Ostomy Care forum and from my own personal experience. While we were there we met some very nice and interesting people, both reps and visitors alike; I met one lady about to undergo surgery for a colostomy and I was able to tell her about Camp Crappy, and not to be afraid – she wouldn’t be alone, and there is a lot of help, advice and friendship (not to mention fun) on there, and I gave her my blog address.
One of the reps (unfortunately I can’t remember which company she represented) was intrigued by my wheelchair decorations and we got chatting about my blogs, and she expressed great interest in the Gutless Bag Lady [now being incorporated into this diary]. She said they do road shows, and if they were doing one locally, would I be interested in taking part? I said I’d be delighted. She said it was very much about stoma awareness, and she said her supervisor would be very interested in my blog – every now and again they feature someone’s story on their website/Facebook page. Great to spread the word!
Several of the representatives whose companies also run supply services confirmed that it is up to the patient to choose which company they go with, and they do not have to be tied to any one company. This is what I had been led to believe. Obviously they would all like one to go with their company but ultimately it is up to us, the patients, to go where it suits us best. The Salts MediLink rep said that they actually support and sponsor two of the stoma nurses at the hospital, and the nurses should not be dictating to patients where they must go – the thinking is that if you choose the storage bag you like, you have to go with the company that supplied that bag. I shall continue with the company “assigned” to me by the hospital for a while, but I do not feel obliged to stay with them if I feel I would like the freedom to choose elsewhere. I know one person who has tried several different companies and given them all a decent amount of business before finally settling with the one of his choice. Everyone I have spoken to about this has said that they have never heard of stoma nurses limiting their patients to only one company. The stoma nurse said to me today that all the companies represented at the open day were ones that the hospital had dealings with, and I was free to choose samples and products from any one of them – and surely this extends to using their delivery services as well. It’s no skin off the hospital’s nose, anyhow; all the companies supply all the products that are listed on the tariff so it really shouldn’t matter.
I am so glad I was well enough to go today. The past couple of days I have been feeling a lot better as the side effects from my first chemo treatment begin to diminish, and I want to take advantage of these “good” days.
Thursday 4th June 2015
Appointment with Oncologist
Today I went to see Dr. Lo, the oncologist. As I expected, this was just to discuss the various side effects I’d been experiencing since my first chemo treatment, and how severe they were. She said that they can be cumulative, especially the peripheral neuropathy, which I can expect to be more severe and to last for longer each time, which isn’t very good news. However, she said I should monitor it carefully, and if it became too severe, they could knock back the dose a little.
I showed her my special silver gloves and she was very interested in those, noting down the website from the wrapper. She said perhaps they should have these on the unit! I agreed that that would be a very good idea.
She wants to see me again in four weeks’ time, and suggested that perhaps the unit would be prepared to take blood from me on the Thursday instead of the Wednesday before my treatment when I was due to see her – unfortunately she doesn’t do a clinic on Wednesdays – if they would allow me to do this, it would save us a trip to the hospital. She wants to see me before each treatment initially, and then depending how I get on, maybe before every other treatment.
My next appointment is therefore on Thursday 3rd July, just before my next-but-one treatment.
A week to go till my next treatment. I am happy to report that the peripheral neuropathy and the jaw pain are pretty well gone now, and my food is tasting normal again. The output from Kermit, my stoma, is now much more back to normal – not so plentiful, and a thicker consistency, so I have stopped taking the loperamide. However, my energy levels are extremely low and I run out of energy very rapidly. I often feel the need to go to sleep at odd times during the day, often in the middle of doing something! Spending any time away from the recliner, especially if I’m on my feet, is making my back ache badly – the fatigue seems to hit me there more than in my legs these days, which is something new.
I mentioned to Dr. Lo the extraordinary thing that is happening to Beatrice, our older cat – having been told that my chemo isn’t going to make me lose my hair, she seems to be losing hers instead! My hubby took her to the vet, who said that her skin looked clean and free of irritation; she is not over-grooming or scratching, and when the vet asked my hubby if anything major had changed in the house recently, he explained that I had started chemotherapy that week, and she said that was the cause of it! Beatrice is a sensitive little soul and picks things up quickly, unlike Phoebe who’s my little Devon Dumpling and who continues as normal throughout any difficulties (with the exception of invasions from foreign cats into her territory, which makes her pee on the landing carpet, hence the need for a litter tray indoors). The vet says Beatrice is suffering from psychogenic alopecia. She started losing hair from her back legs this year, and we realise that it coincided with my illness, and after I came out of hospital she wouldn’t come near me for several weeks. Eventually she came around, but since my first chemo treatment she’s given me a wide berth again, and the loss of fur has now spread to some patches on her sides. The poor little thing is looking a fright – she’s always been so fluffy and soft and it’s very sad to see her in this state. We are glad that at least the weather is warmer now so she’s not going to feel it quite so much.
I have received several gifts and also made some to give to my fellow patients on the unit, to provide a little joy and comfort during the rigours of chemo! So important to encourage the feel-good factor during this period as it really helps one through the tough times. Nice to be able to spread a bit of love to others!
Later edit: I made enough of these little boxes, lavender sachets and cards for each of my fellow patients on the chemo unit. They were very well received, and the staff thought they were lovely, and were very touched that I’d gone to all that trouble. I had hoped to make more gifts for future sessions but as my treatment continued, I felt too unwell to do anything more.
Saturday 13th June 2015
2nd Chemo Treatment
It’s been a few days since I updated this diary. I went in to the Ricky Grant Day Unit on Wednesday for blood to be taken through my port, in advance of my treatment yesterday. I had spread the tube of Ametop local anaesthetic cream onto the skin over the port just before we left home, and had a dreadful job getting the dressing to stick on it – I tried applying another one over the top and that didn’t stick too well either, because the stuff kept leaking out the sides. At the hospital the nurse told me to use half a tube next time, and to put the dressing on vertically rather than horizontally, and this certainly worked better when I did it yesterday.
The nurse had an assistant with her who she was keen to train in the technique of taking blood from a port – she had never done it before, and since this was my first time too, I was a bit nervous about it, but agreed in the end when I was reassured that she had had adequate training and had witnessed the procedure several times. She got the needle in OK, and it stung a bit despite the local anaesthetic, but she failed to withdraw any blood. At this point the nurse took over and reinserted the needle and took the blood so quickly that I was shocked when she said, “All done!” (I’m such a wimp with needles that I always look away!) It didn’t hurt at all that time. She said it can be quite tricky because you have to get the needle right in the centre of the port where there’s a slight depression, and the port does tend to wander about a bit, which means you have to grasp it quite firmly and exert some pressure – despite the nurse’s warning, this was not uncomfortable at all.
The bloods would be sent off to the lab in plenty of time to ascertain whether my chemo dose needed to be adjusted.
Off to the RGDU (Ricky Grant Day Unit) again yesterday at lunch time for my second chemo dose. My hubby dropped me off and didn’t come up this time – I said there was no point trying to find a parking space. Things are difficult at the hospital now because the main entrance is closed because of major building works as they construct a new ICU, and we have to use Outpatients main entrance and the parking, always difficult, is now worse! I’d just got the geography of the place sorted from the main entrance, but from OP it’s a rabbit warren! I had to go in that way on Wednesday because my hubby had brought a friend in to the diabetic eye clinic and after his treatment he can’t drive, so we went up together and my hubby dropped him off after we’d finished. Yesterday, though, he dropped me off by the chapel which is very close to Ricky Grant.
I went armed with a basket of my little lavender sachets in their boxes – I’d managed to make 16 and hoped that would be enough – it turned out to be exactly right, and everybody was so thrilled and loved what I’d done. The receptionist and all the nurses thought they were gorgeous too and were overwhelmed that I’d thought of doing this! I certainly wasn’t expecting such a good reception. They helped me distribute them too, because once I’m connected up I am no longer independent because I need two hands to propel my wheelchair and can’t push the IV pole as well.
This time I sat in the treatment room rather than on a couch as there were no couches available, and anyway I was feeling a lot better than last time, when I was still recovering from the general anaesthetic from when my port was installed. I sat in my wheelchair to start with, but after an hour or so I started to feel very tired and my ankles were starting to swell, so after a visit to the loo, I sat on a recliner chair (not uncomfortable, but not as soft as my one at home!).
I felt OK until about the last hour of the four hours’ treatment, when I started to notice that my thumbs were getting a bit numb. I soon started to lose control over my fingers and my throat felt odd, and I couldn’t speak very clearly, and as the final hour went on, I started to feel quite poorly and really wiped out. I didn’t feel bad on my first treatment until I got home. Dr. Lo did warn me that I should expect to feel considerably worse this time around. I was aware that the effects are cumulative.
When we got home I went straight to bed and my hubby brought me some supper on a tray – I was actually very hungry because I’d eaten very little all day. When I arrived I was expecting a lunch box like on the first occasion, and when nothing was forthcoming, at 1.30 I asked if I could have some food, and they said that they only gave lunch boxes to people who were there for six hours. Nobody had told me this, so they found some sandwiches for me in the fridge. Next time I shall have to go armed with sandwiches.
I slept on and off for most of the evening, feeling very poorly and shaky. I am still suffering from the shakes as I type this, and am having to go back constantly to correct typos – my hands feel as if they don’t really belong to me! The peripheral neuropathy is a lot more severe than last time, too. So far I haven’t felt sick, apart from a slightly unsettled feeling in my stomach this morning, but as before, they have given me some Ondansetron for the relief of nausea, and some Dexamethasone (steroid) to be taken for a couple of days, and I’ve got Domperidone anti-sickness to take when necessary thereafter.
After sleeping for much of the evening, I didn’t have a good night, but I’m up now and feeling OK if I don’t try and do anything!
Pelican Select Convex Drainable Pouch–Product Review
After attending the recent stoma open day, I received a sample pack from Pelican, of three of these bags. Their representative phoned me the other day to see how I got on with them, but at that stage I hadn’t yet tried them, but promised to do so and let them know how I got on with them.
I told her that I was already using the Coloplast SenSura Convex Light bags and once they bring out the SenSura Mio in the convex, that will be my bag of choice, and I felt I should tell her that up front. She said that was fine, and they appreciate any reviews of their products because such feedback always helps with improvements in the future.
I put on this bag on Thursday so I have now been wearing it for two days, and I must say I am generally very impressed.
The convex flange on this bag is very soft indeed, and the backing sheet on it protecting the sticky surface is thin and flexible, with good measuring guides for cutting the hole to size. It is the easiest bag I have ever cut – really soft and effortless.
The sticky surface, called “Skin Protector,” is quite thick compared with other bags I have tried, and it has a foam back, which is extremely flexible. What impresses me most, apart from ease of application and comfort during wear, is that I have experienced no itching at all. On day 2, wearing the Colopolast bags, I do experience some itching under the glue; it’s not a major problem and isn’t caused by any reaction, and there isn’t any evidence of redness or the skin breaking down when I change the bag, but it is an indication that I will soon need to change the bag. With the Pelican bag, however, it has remained very comfortable and so far there is no itching at all.
The bag itself has an “anatomical” asymmetrical shape which is comfortable to wear, being curved on the outer edge so that it sweeps away free of one’s leg. The capacity of the bag is, I think, somewhat larger than the Coloplast bag. The cover is beautiful – it has firm feel to it which I knew would be unlikely to go fluffy with contact with one’s clothing after a day or two, as I have experienced with one or two sample bags I’ve tried, and this has proved to be the case. I am also very impressed with its opacity. The Coloplast bag, while it does have a flesh-coloured opaque cover on it (which again does not go fluffy), you can see the stoma output through it because it is rather thin, but with the Pelican bag, the cover is thicker, and nothing is visible.
It has a split in the middle, underneath which is the clear bag, and you can view the whole of the bag through this, and not just a “port hole” around the stoma, as with another bag I tried. It is very easy to see exactly where to place the bag over the stoma. (On this photo, you can see the thickness of the flange.)
The opening on the tail more closely resembles the Coloplast bag than any other I have tried, with the triple fold-up, and the winged tabs which are pressed down over the folded tail and held in place with Velcro.
I still like the Coloplast one the best, with its two rigid strips – the one on the underside of the bag is located below the one on the top, which means that when you empty it, there is a “step” that the output goes onto before draining away, and I find this easier to wipe with some folded toilet paper wrapped around the end of the bag, without getting any output on my hands. The Coloplast bag tail opens a lot more easily too, because the rigid strips are slightly stiffer, and you just press the sides together and it pops open. With the Pelican bag, the rigid strips are one directly above the other, and you squeeze the sides together to make a “U” shape:
and then pull on the little tab to open the upper layer towards you, which is a two-step process, and I find it doesn’t always work very well, especially when it is wet, because it tends to stick shut.
I couldn’t show a full demo of opening the bag because it required two hands and I needed one to hold the camera!
There is a very effective “fold up” system after you have closed the tail. As with the Coloplast bag, there is a Velcro dot under the opaque cover.
Once you have closed the tail, you fold it up, and stick the exposed Velcro strip between the two tabs, to the Velcro dot, and this holds the tail in place under the cover.
It folds up higher under the cover than on the Coloplast bag.
This is a good thing, because with the weight of the output, I do find that the Coloplast bag tends to sag at the bottom, and while it is still attached to the Velcro dot, it falls down below the cover and flops outwards.
The Velcro dot on the Pelican bag is also slightly larger, and has much tougher Velcro hooks on it, so is more effective. However, yesterday (1st full day of use) I noticed that the dot had come unstuck from its adhesive and was stuck on the tail, leaving the adhesive behind under the cover, and the cover has stuck firmly to it and is quite immovable, rendering the fold-up system useless; I don’t know if this is a one-off, and that it won’t happen with another bag, which I will have to try and see. Ed. 16th June after trying another bag: It is clear that body warmth softens the adhesive on the Velcro dot, which makes the Velcro dot slide off, exposing the sticky surface on the inside of the cover, which then adheres firmly onto the clear plastic lining of the bag. The two cannot be pulled apart without risking tearing a hole in the plastic bag. This renders the tucking up of the tail impossible because the cover remains stuck to the bag in the centre. This is a design fault which needs to be rectified – they need a different adhesive for the Velcro dot.
I am not convinced that the filter on the Pelican bag works very well; it is obviously letting some gas out (and I do produce quite a lot of gas!) because I am getting some smell from the bag. Fortunately it is merely the smell of the excellent OstoMart mint deodorising drops sample that I got at the open day – but I have never smelt anything from any of the other bags I have used. The gas is not dispersing fully, either; I still have to burp this bag to get rid of it. Ed. 16th June: To prevent any smell getting out, I have now covered the filter with one of the circular stickers they provided with the samples.
To be fair, I’ve never been convinced by filters on any of the bags I’ve tried; there is no evidence that any gas has escaped at all – odour or otherwise!
In summary, I must say I am very impressed indeed with this bag; the only drawbacks are the filter and the closure, and the failure of the system to tuck the tail under the cover, but these are minor gripes. The quality of the bag is excellent and once it’s on, you can forget it. I would definitely seriously consider choosing this bag above the Coloplast, but I am anxious to try the new Coloplast convex SenSura Mio as soon as it becomes available, and if it works as well as I am expecting, that will be my No. 1 bag of choice.
Tuesday 17th June 2015
Aftermath of Second Chemo Session
I am definitely not doing so well after my second chemo treatment as I did after the first. The oncologist warned me that the effects of the second treatment were likely to be more severe, and she was right.
I have been feeling extremely poorly, very exhausted and feeling generally ill, with no appetite. The peripheral neuropathy is starting to pass off, more rapidly this time, which is good, but the other symptoms have been worse. Last night I could not eat any supper and felt pretty nauseous, and was sick when I went up to bed, so today I’ve been dosing myself with domperidone to keep the nausea at bay. I didn’t get up until lunch time, and have spent the rest of the day on the recliner resting, quite unable to do anything, so I’m not even trying! Better to ride the wave, go with the flow and hope it will pass (which I know it will).
The output from my stoma is as it was after the first treatment – much larger quantity, and extremely liquid. I normally cope with dealing with bag emptying etc. very well and am not fazed by it, but after chemo it seems really to revolt me and I find it hard to deal with. It may be because my stomach is feeling slightly unsettled. I had to get up two or three times in the night last night, in order to empty the bag. It is very unpleasant.
I have been able to eat very little today, but my dear hubby has prepared appetising small meals for me; for supper tonight he cooked some chicken thighs with barbecue sauce, and he served me with one (they are very small), with a tiny baked potato and a small serving of broccoli, all on a smaller plate so it looked like a proper dinner, and looked appetising! He also bought me some little tubs of rice pudding which he has warmed for me – these slip down easily and are very pleasant. I have no doubt that my appetite will return in a day or two but it’s horrible not wanting food, and then having it taste horrible when one does eat it! My sense of taste is definitely off, with food being tasteless without the addition of a lot of salt, and I also have a rather unpleasant taste in my mouth for much of the time.
At the moment I am not able to do anything creative or practical, but I shall start making some more gifts for my fellow chemo-ites as soon as I feel well enough. Meantime, I’ve started some very simple knitting (a scarf knitted in the round) which is so mindless that I can pick it up and do a few stitches if I feel like it.
All this will pass, I know. I just have to put up with it until it does. I am grateful for this treatment, however unpleasant it may be, because I know that it is mopping up any rogue cancer cells that might still be wandering about in my system, and with each treatment I have, it’s one less to have, and by November it will all be over and I can look forward to a cancer-free life – and the start of a new year full of promise! I have a lot to be thankful for.
Comments from my old blog
Kelly
1 June 2015 at 17:42
Hey Lady! Sorry I’ve not been in but I have been thinking of you. The fact that your down does not surprise me with all you’re dealing with at the moment. I am happy to hear the doctors are happy with your progress so far. Hang in there, sweetie. Event he strongest person has moments where enough is enough. They will pass. Know you are loved and prayed for. Hugs! Kelly
Lindsey Caldwell
12 June 2015 at 20:42
Hi, I’m Lindsey! I have a question and would love to speak with you about your journey. Could you please email me when you have a chance? Thanks so much! 🙂 lindseyDOTcaldwellATrecallcenterDOTcom
Trana
15 June 2015 at 16:45
Dear Shoshi, What kind thoughtfulness you have for taking the time to make such lovely gifts for those battling cancer and going through chemo! Funny you talked about the Filipina nurse…I am actually from the Philippines and my husband is from the US. We met in Thailand many years ago. He is my rock. I hope today you are feeling good. Remember take it one day at a time. Hugs…Trana
Anne
17 June 2015 at 21:26
Hello Shoshi just catching up. I’ve managed to blog – only short posts at long last. Sorry to read that you are feeling so rough but I know it’s what you expected and as you have said it will pass and will be worth it in the end. Roll on November!!!!!!! I’m not surprised your lavender bags were well received – it was a lovely thing to do. Still in my thoughts and prayers. Anne x
