Blogs

Blog Post: Day 75

paul-f — Fri, 24 May 2013 19:09:00 GMT

Another day gone, another day closer to those damned treatments. Today has been a day of visits by various nurses to check on and drill the care of the feeding tube into me. Yes, I have this lovely little plastic socket in my stomach now, with a little tube hanging down. I can now pump water, food (provided its a liquid, of course) and medicine direct into my stomach. Lovely. The darned thing has caused me grief today - I am suffering badly from gas still, it get trapped on the way up and I feel like crap until I can manage to get it out. The pain of trapped wind is bad enough, but when you get it constantly it can be rather debilitating. At times today its been bad enough to make me feel nauseous too, a horrible hot and sweaty sort of sickness which adds an unpleasant edge to the general pain. I have been assured that it will settle down, I could just have done without it today. I won't have eaten enough today now - I bet I lose some of my hard won weight gain just before the start of treatments next week (when I will doubtless lose more). The problem is if I lose enough weight then they have to remake the mask I have to wear for the zapping, which would just cause a delay in the middle of the treatment schedule and generally be a pain in the butt.

I also had a hospital appointment today - this one was to "validate" the mask and take a final set of xrays before they start cooking me next week. I actually met the machine that will do said cooking as a result - the thing triples up by doing xray and CT imaging too - which was interesting to find out. For those that don't know, the process of being zapped/cooked by this thing involves laying to a table thing which as a mould for your neck and head to rest on. Then comes the mask part - its a white plastic thing, a breathable type of plastic full of holes, which is moulded to fit very tightly. That first sensation of it being placed over your face is bad enough (you can't open you eyes with it on, thats how closely it fits) but then they clamp it to the table and suddenly its totally skin tight - the initial feeling of it being clamped down is not nice, but once done its not too bad. You then get fed into the machine and it spins and whirs around taking xrays or scans of the region to be treated before they finally set it off on its cancer killing spree. That last part I have yet to experience, today was about making any final adjustments to the targeting and the mask.

I don't know how long I was in the machine today, but I asked if the actual treatment would be a comparable length - oh no, they reply - which is a blessing, I had thought that I would find the whole process claustrophobic - in fact its over quick enough to be kind of relaxing. I daresay I will get used to the mask, they have promised to cut eye holes in it for me so at least I can see what is going on.

Blog Post: Enhanced Cancer Recovery Road Show

Rosebud1961 — Fri, 24 May 2013 17:35:00 GMT

On Tuesday 28th May 2013 there is a Road show as above being held . It has been added to the Macmillan Cymru website but not this one unfortunately and as a Carer whose husband has benefitted so very much from the Rehabilitation Programme offered by Macmillan in Singleton Hosptital i want to spread the news as far as I can.

COME AND TRY THINGS OUT, TALK AND MEET US, BRING YOUR FAMILY/FREINDS,

its FREE

Please share the Event details with anyone you may know living in Wales or near so that the good work done by Macmillan can be spoken about even more and become even more renowned for its wonderful caring Professionals.

Lets help them help us ;)

Blog: REALLY BIG EVENT in SWANSEA on 28th May 2013

Rosebud1961 — Fri, 24 May 2013 17:19:00 GMT

Enhanced Cancer Recovery RoadShow Tuesday 28th May 2013 2-3.45pm LC2 Swansea (Oystermouth Road, Swansea, SA1 3ST) Completely FREE event for EVERYONE affected by Cancer.

Blog Post: Ayup Gran, it's me again..

HuiYaMing — Fri, 24 May 2013 14:59:00 GMT

I took the initial step to find closure today, I visited a Bereavement Counsellor. It kind of feels like with 'closure' that I'm supposed to forget you. Yet, I never will, ever. You played such a huge role in my life. I managed to compose myself and not once cried when I spoke about the lead up to your passing. I wish I could of held your hand, just sat with you. I am almost in tears now, okay, I fib, I am crying.. gently. Just for the loss we had, yet I am so blessed to of known you.

I will not let your death be in vain. I have volunteered my time to the Race For Life on Sunday. I will also arrange talks with locals schools, and such. Just so people can be more aware. Try prevent these sad occurences.

I miss you so much, you gave me everything. You made me believe in myself when it was so hard to do and I will never forget that.

I miss you more every day..

I thought I saw you earlier, I knew if I looked properly my eyes would show me the truth and I just couldn't bare to look. You'd of disappeared.. I love you more every day, even though you're not here.

Please, don't forget me. I hope you will wait for me and one day we will be reunited.

I love you Gran, you was and still are my World.

Your Little Cutie. x

Blog Post: Worried Lovis

Lovis — Fri, 24 May 2013 13:59:00 GMT

I am feeling very worried today. My scan was fine but I still have this pain (ache) under my breastbone and don't really ever feel very hungry. I have had irritable bowel/stomach symptoms all the way through the chemo and it just worries me that my appetite is not good. One of my best pleasures has always been eating and it makes me sad not to enjoy it anymore. As my CT scan was normal I feel like I'm making a fuss about nothing but I'm so scared it's coming back. In my mind I feel that the last 3 chemo sessions after my hysterectomy were not so effective but this is probably not the case. I'm also paranoid about the fact that my last CA125 was 12 but the week before it was 11. Is it going up? Do other people feel as worried as I do? I have loads of time to think about it all as my boss made me redundant after my last chemo...........what a nice man!

Blog: Worried Lovis

Lovis — Fri, 24 May 2013 13:58:00 GMT

Ovarian cancer worries!

Blog Post: Have you tried the mobile Online Community?

Izzy - Macmillan — Fri, 24 May 2013 11:14:00 GMT

If you’re in hospital, or having chemotherapy, you won’t be able to get to a computer, and yet you might be more in need of support than ever. Did you know that you can get support on the go with a version of the Online Community specially designed to work well on smart phones and tablets?

We’ve been running a pilot version of the mobile site, to test it out and see how well it works for members. It’s laid out much more clearly for reading on a small screen (to save you zooming and squinting!). Plus, it allows you to do things that didn’t previously work on mobile, like insert paragraphs.

If you’re a smart phone or tablet user, we’d love for you to give it a go.

Try our mobile site

Please be aware that if you search for the Community using a search engine on your mobile phone or tablet, it will still currently take you to the desktop site. You might want to get around this by adding the mobile site to your bookmarks or favourites (on most devices, you can do this by tapping a star symbol in the corner of your web browser).

We need your feedback

As the mobile site is currently a pilot version, so it doesn’t have all of the features of the desktop site.

Find out what you can do on our mobile site.

We’re now planning to improve on the pilot version and add more features to it. But, to help us do that, we need to hear how it’s been working so far. Please send us your feedback to community@macmillan.org.uk – or post them in the comments below.

Blog Post: End May 2013

Christine1 — Fri, 24 May 2013 01:27:00 GMT

Alls calm is Christine's world.

I had a wonderful months holiday in Cambodia and Vietnam. In Cambodia we stayed in Seam Reap, visited Angkor Wat, and took a helicopter ride over the sites. Vietnam was a great experience, starting in the South we stayed in Saigon and took a 3 day trip down the Mekong Delta, then headed north to the beautiful town/Cities of Hoi An, Halong Bay, Hanoi, and finished with a 6 day 4x4 trip up into the mountains finishing in Sapa which was spectacular. This is such a beautiful part of the world, filled with welcoming, friendly people who I will never forget.

My home business is doing very well, but the lack of any signs of summer is starting to depress me slightly.

I still miss my Mum so badly and still have a good cry occasionally. I recently placed her in her final resting place on the top of a Somerset Hill: Its a lovely spot which overlooked the the Mendips, Glastonbury Tor and Burnham-on-Sea, which is where she lived. I can see the hill from the bottom of my garden and can watch the sun set behind it every evening, which is very comforting.

Had a family trip to Krakow in February......such a lovely snowy place and a good few days of eating, drinking and good company.

Visited Northumberland and the Scottish Boarders where we did some great walks and caught up with relations in the area. Now I feel I'm just drifting around waiting for the summer to start and planning our walking weekends to Brownsea Island, Norfolk and Snowdonia.

My health has been very good. I had a bone scan in February and my GP said there is an improvement in bone density.......very pleased with myself. (pat on the back).

Blog Post: Day 74

paul-f — Thu, 23 May 2013 18:52:00 GMT

So, no diary yesterday as I was in the hospital having the PEG feeding tube done in preparation for treatments starting next week. I have spoken before about how I wasn't looking forward to it, nothing much changed my mind before I went in. Unfortunately it took 5 or 6 attempts to get a bloody cannula in me to give the sedative (at this point I thought it was going to be full general anesthetic). After about the fourth attempt I was ready to walk - in fact it was only my wife being there that stopped me from doing exactly that. Fortunately one of the doctors from the team doing the procedure was at hand and managed to get the thing in on the first attempt.

They explained the procedure (camera down the throat to the stomach, inflate stomach, local anesthetic and then a wire is pushed through the abdominal wall into the stomach and the feeding tube is pulled back through) and why they wanted to do it. I was the wheeled off (well, after another wait) to the procedure room and given the sedative. Fortunately I realised too late that I wasn't being put to sleep (I dreaded the thought of being awake) but the sedative kicked in so fast I never really got a chance to worry. Duly away with the fairies (to coin a phrase) they then proceeded to push the camera down my throat. This was a odd feeling - especially when I had to swallow it - but to be honest I was too engrossed at the picture on the screen from the camera to really notice. It was one of those things I think you have to be sedated and properly relaxed to appreciate, but there was something fascinating about see the inside of your own stomach. Either way I didn't really notice the wire and tube pulling part, as by this point I was virtually asleep.

But I made it through it, removal is as simple as removing some saline from the end of the tube and it being simply pulled out - apparently the hole in the stomach only takes half an hour to fill back in. Thats another worry gone then.

Post procedure the worst part was getting the gas they pump you with out - you feel incredibly bloated (and a bit sore) and rather sick. In the end I had to get up and walk around the ward and adjoining corridors to encourage it out - I'm sure the other patients enjoyed my gastric melodys :-)

I slept rather poorly, I never sleep well on the first night in a new place - it takes me a while to get used to a new bed anyway - but a hospital ward is never an easy place to sleep I find. I got a few hours, but thats about it, I am paying the price today. I've not felt like eating much either - I still feel bloated and sore and just nor hungry. I will have to have a couple of supplement drinks to fill the gaps.

It was good to talk to some fellow cancer suffers too, there were a couple of very friendly guys in the ward who had either been through or were going through the same things I am. It was a mixed bag to share the experiences, one was good, one was not (being terminal now) but both were full of humour and laughter despite what they were going through. This always gives me a lift, I think it shows just how human people can be, it shows the best of us I think that we can face such adversity and smile still.

Blog Post: Getting travel insurance: useful online resources

Graham - Macmillan — Thu, 23 May 2013 15:48:00 GMT

If you’ve read the last two posts on this blog, you’ll already be well aware (and quite possibly tired of me harping on about!) our travel insurance information and list of travel insurance companies. So for this post, I thought it would be good to highlight some other really useful websites that could help you find a reasonable deal.

Here are some online resources from other charities that you may find useful:

Cancer research UK produces a list of travel insurance companies that visitors to its website have recommended. Some of these companies are the same as ones in our list, but there are other suggestions in there too. As with our list, there’s no guarantee these companies will be able to help, but at least these contacts could be a good starting point.
Prostate Cancer UK produces this fact sheet for men with prostate cancer who want to travel. It includes information about travel insurance.
Breast Cancer Care has this information page. Also, try searching through its forum and – much like Macmillan’s Online Community – you’ll find discussions about companies that people are sharing their thoughts on.
Maggie’s offers a PDF with a long list of travel insurance companies they’ve contacted, which offer travel insurance to people with a cancer diagnosis.
Lymphoma Association has this PDF fact sheet about getting travel insurance when you have lymphoma.

Popular price comparison websites, such as these ones, are worth a look too:

They let you fill in an online form and get a range of quotes from different providers. For some people, filling in an online form to describe the details of your health condition is less worrying than calling up a company.

This blog post gives a handful of examples of online resources. Have you found any other websites useful?

Finally, just a quick note to say thanks very much to everyone who has commented on this blog so far! We really value your comments about travel insurance companies, and are taking them into account as we revise our Getting travel insurance booklet, which should be printed in July 2013. Thanks again.

Blog Post: Get active, feel good: guest bloggers wanted to trial our new DVD

Priscilla - admin — Thu, 23 May 2013 14:26:00 GMT

This summer, Macmillan will be releasing a new exercise DVD in partnership with Boots, and we’re looking for guest bloggers to test them out for us and let the Community know what they think.

We’re working with Boots to spread the word that physical activity can be great for people living with cancer. It’s not about spending hours in the gym, but keeping active at an appropriate level during and after cancer treatment can boost energy and help to reduce the impact of side effects.

Get Active, Feel Good is specifically developed for people living with or after cancer. There are two to three different levels for each activity, so you can find a level to suit you. The activities are set to music and led by cancer fitness expert Dr Anna Campbell.

It will be available for free in store, from Boots Macmillan Information Pharmacists who have undergone training about physical activity and cancer, or online from Be.Macmillan.org.uk.

Testers wanted

We’re looking for Online Community members willing to try out a sneak preview of the DVDs before they are released, and then write a blog post to let us know how you found it.

Ideally, you’ll be someone who isn’t very active at the moment, and you’d be willing to try out the DVD for four weeks. After that, you’d just need to email me the text of your blog and I’d publish it as a guest blog right here on the Community News Blog.

If you’re interested in taking part, please email me on community@macmillan.org.uk, with a few details about where you are on your cancer journey.

Stay safe

Before you start using the DVD, please read the safety booklet that comes with it, and check with your doctor, nurse or physiotherapist if you are unsure what activities are safe for you.

Blog: Trying to help my Nan

michaela88 — Thu, 23 May 2013 12:05:00 GMT

My Nan has lung cancer, im trying to help her as much as i can but im struggling

Blog: http://mrssandthebigc.blogspot.co.uk/

Original1 — Wed, 22 May 2013 16:22:00 GMT

A helpful, practical blog by a survivour of CNS lymphoma (brain cancer/tumours) which attempts to answer all of those non medical questions that everyone affected by cancer has to deal with at some time or another.

Blog: http://mrssandthebigc.blogspot.co.uk/

Original1 — Wed, 22 May 2013 16:21:00 GMT

A helpful, practical blog by a survivour of CNS lymphoma (brain cnacer/tumours) which attempts to answer all of those non medical questions that everyone affected by cancer has to deal with at some time or another.

Blog Post: How to be there for someone with cancer

Abi - Macmillan — Wed, 22 May 2013 15:49:00 GMT

Finding out that someone you care about has cancer can leave you feeling helpless. You might be worried about what to say or how to help. But it’s easier than you think. You might be a relative, friend, colleague or neighbour. You might live near your loved one, or on the other side of the world. Whatever your situation, we can help you support them.

A lot of people want to help their friend or relative, but feel anxious about the best thing to do. They worry that they’ll get in the way, or that they won’t be able to cope with seeing their loved one looking unwell.

People also worry about what to say. They're scared they won’t be able to find the right words, or that they’ll say something that will make the situation worse.

But Macmillan isn’t just here to support the person with cancer; we’re here to support you too. We have information and resources just for you, and we can help assure you that you won’t say or do the wrong thing. No one should face cancer alone, and with your help your loved one won’t have to.

Information

We've got a brand new resource called Be there for someone facing cancer. It gives you practical tips on how you can support your friend or relative, and it suggests ways you can talk to them about what they're going through. It also takes you through the cancer journey, so that you can learn about what they're dealing with and feel confident asking them about it.

To order your free copy, text FREE1 to 70550*. Or you can order a free copy online.

We also have a resource called Lost for words - how to talk to someone with cancer. This has more information about how to support your friend or relative by talking and listening to them.

You can either order a free copy of the booklet, or you can read the information online.

Support

It can be very frightening when a friend or relative is diagnosed with cancer, and it’s important to remember that you may need support too.

Whether you have questions about cancer or just want to chat to someone, our cancer support specialists are here for you. Call us free on 0808 808 00 00, Monday-Friday, 9am-8pm.

Our Online Community is also here for you round the clock. You can use it to share experiences, ask questions, or get and give support.

* Texts are charged at standard network rate. You will receive a phone call so we can obtain your address details and dispatch your free guide. Obtain bill payer’s permission first.

Ideas for blog posts? Let us know.
Comments? Feel free to add them below (you need to be logged in). If you can't see the comment box, click on this blog's title at the top.
Keep in touch Follow Macmillan’s cancer information team on Twitter @mac_cancerinfo

Blog Post: I hate them all!

Jen_again — Wed, 22 May 2013 15:43:00 GMT

OK so my hubby started his chemo today.......6hr session....

When we went for his last appointment i specifically asked if i could be with him to support him...we got told "no......the nurses are there to look after him in the hospital....your job is to look after him at home".

My job? My job? It's not my job......it is my wish..he is my husband!

He has been at the hospital all day...and i have been sat at home crying all day at the thought of him going through this alone.....

Isnt this hard enough without hospital key workers telling you that you are not allowed to be there to support someone......

I just dont know where to turn.....

Blog Post: Day 72

paul-f — Tue, 21 May 2013 21:38:00 GMT

So. Peg fitting tomorrow and I get all the gory details on the chemo. Joy of joys. It also means a overnight stay for the PEG - not that this bothers me that much but who enjoys a night on the ward?

On another note, after yesterdays adventures with trying to eat normal food I have, possibly as a direct result, suffered with constant indigestion today. Everything has repeated on me and I have had heartburn all day. Gaviscon has been my friend. My friend that tastes disgusting. Well, that is one problem that won't last, the radio will (temporarily) do my taste buds in and I won't taste how horrid the gaviscon is. At least it offered some relief.

I stuck to soup and smoothies (and my supplement drinks) today, I'm not allowed to eat tomorrow until after the procedure, so hopefully I won't suffer the damned indigestion as a result of eating more conservatively today.

Tiredness has also plagued me this afternoon, but then perhaps I overdid the bike ride today. It was only a 4.5 mile ride, but I did attempt a hill which previously I wouldn't have even changed down a gear for. This time I was gasping for breath and feeling like my legs were made of jelly after halfway (possibly less), so I made a show of stopping and checking my phone for messages (can't let anyone see I can't ride up a short hill!) and pretending to reply to one whilst I got my breath back. Nonsense, I know, but what can I say - there is only one thing worse than being weak and that is giving the appearance of weakness. Just because I have (or had, to use the more hopeful past tense) cancer, it doesn't mean I'm not still the same stubborn, prideful, masochist of a man that I was before :-P

On another note, I had a phone call with my mother tonight - whe said something which gave me a bit of hope. She said that she is starting to hear my old voice again, the timbre and tone, when I talk - which is nice to know. I don't know if I will ever be free of a slight speech impediment (especially with my "esses"), I have lost 70% of my tongue (lost! what a stupid way to put it, makes it seem like I'll find it down the back of the sofa one day or something! Its not lost, its been taken away) which is going to change my voice somewhat. Hopefully as the swelling goes down and the remaining part of functional tongue gets stronger I'll gain more function - like being able to lick my lips. You have no idea what its like not being able to lick your lips until you can't do it any more. Or stick my tongue out. The furthest I can manage is to just about get the tip of it to just poke out of my lips, nothing more. I have no idea how much of that kind of movement my tongue will be capable of.

Oh well, I can't say I'll be that bothered if I can't stick my tongue out any more - but I will have to work hard to get rid of the speech impediment. Perhaps I will have to start practising, maybe singing will help. It'll also annoy the hell out of everyone, always a bonus I think :-P

Blog Post: Challenge the caring crisis

Rebecca T- Macmillan — Tue, 21 May 2013 07:45:00 GMT

Many people could face cancer alone without the support of friends and family. But looking after a loved one with cancer can be tough. Macmillan’s campaigns team tell us more.

Almost 1 million people in England help to look after a friend or family member with cancer but, too often, many miss out on the support they need.

Today we’re launching a campaign to coincide with the government’s new Care Bill, calling for change to make sure that carers are:

identified as soon as possible

signposted to the support they need.

We spoke to Sharon, who told us why she feels it’s so important that carers get support from day one.

While caring for her mum, Sharon found it really difficult to access support.

Struggling to balance work and family duties, Sharon had to change her working hours to be with her mum, which had real impact on family finances.

With little support or information, Sharon found herself trying to find out about her mum’s condition and where to go for help at a very difficult time.

‘When we first found out that my mum was ill – I thought where do I start? I didn’t see myself as a carer so taking that on board and finding support was hard.’

Sharon accessed support from the Macmillan website and Macmillan team, which helped share some of the load. Sharon feels that information and support are vital for people like her, as they cope with taking on their caring roles.

‘It was a big shock but having access to the right information was another bit of armour.’

There are thousands of cancer carers in England who, like Sharon, are reaching breaking point, exhausted from doing all they can for their loved one or friend. It is vital that the government acts to address this lack of support.

How to help

Join our carers campaign to ask the government to tackle the caring crisis and fight for those who care.

You can also get involved with Carers Week 10 - 16 June.

Get support

If you are caring for someone with cancer we have information and support to help.

Blog Post: Day 71

paul-f — Mon, 20 May 2013 18:44:00 GMT

As the dreaded treatments draw ever closer I find myself making unexpected progress. I continued to try and find things I could eat, things to practice with. At home alone is a good time to attempt this, I can get into a mess or spit things out without getting any comments from children or generally just grossing people out.

To this end I went to the shops after the morning school run. My original intention was to (apart from getting the kids dinner for today) just stock on up some yoghurts and the ingredients for the smoothie I make at lunchtime. After yesterdays success with mango I decided to try something different. I picked up some nice honey and sunflower seed wholemeal bread and a sweet potato. The potato was for lunch and the bread was for an immediate experiment as soon as I got back.

The bread was reasonably successful, I often found myself having to manoeuvre the piece from, say the roof of my mouth, with my finger (I still cannot move my tongue enough to do it that way) to the left side of my mouth where I could chew it. The other, surprisingly so, hard part was actually biting through the crust. I simply struggled to exert much force AND I found it rather uncomfortable on my bottom front teeth. I succeeded though, even though the crust was hard to chew and the sunflower seeds kept getting lodged in odd corners of my mouth.

Lunch was easier, being softer, I ate most of it but couldn't finish it. I am again surprised at how much my appetite has changed over these last few months, especially since the operation.

I managed a short bike ride between the rain showers again today, I also got some more work done. I am paying for that bike ride now though - I am feeling somewhat tired. I have one more day of relative normality before my next hospital appointment, this time to get the gruesome details on the chemo and to have a small operation to have a PEG tube fitted to allow me to be syringe fed if the radio and chemo makes me really ill.

At least it looks like I won't be having chemo on my actual birthday, so after a short visit to be cooked in the morning I get my birthday back to enjoy now - hopefully I won't actually be feeling unwell or having a reaction to the damned radio at that point, being the first session and all. It seems a shame to lose any progress I have made because of the side effects, I will have to work hard to try and keep going - apparently the fatigue can be really bad, but you are better off keeping going that giving into it - they do recommend gentle exercise if you can manage it to help alleviate it a bit. We'll see, so far I've done better than they have always expected, so I'm gonna try to do it again.

That and the fact that if I can keep up and about and eating normally then I know my family, especially my wonderful missus, won't worry so much about me.

Blog Post: A waiting game.........

eviesluv — Sun, 19 May 2013 20:26:00 GMT

After my girl having a fab birthday and a day of trying to rest a bit...........(still feel poop with the shingles, at least the meds are in my system for them now)..........my appointment arrived through the post for a MRI on sat and its for in 2 weeks time........ 31st May.

im in 2 minds about this date and the time between it -

side 1 - That i shouldnt be so concerned as they are making me wait so maybe its its not a worry really and something came back good on my PET scan.

side 2 - I was told before that the normal waiting list for a MRI at minimum was 6 weeks so is this still a quick time to be getting it all done in.

hmmmm perhaps im just thinking about all this too much but the one thing i do know is im not getting any results till after the test.......not sure if im getting blood tests or not and not sure what other tests might be done.