Tattoos, Frasier, and new treatments…

Greetings all,

Apologies it’s been such a long time since my last post – it’s been a period of ups and downs, which should become clear throughout this post.

Right then, where to start?

Ipilimumab

Well the first thing to update you on is our decision regarding Ipi. So following that disappointing appointment at the Royal Marsden (described in my ‘long time, no write…’ post), we went back to clinic a fortnight later to discuss the issue further. We approached this appointment fully prepared to argue our case to go on Ipi – but the doctor that we saw presented a very convincing case against taking this option.

She confirmed that it was the consensus of the whole team at the Marsden (including the doctor who had been on holiday during my previous appointment) that Ipi was not suitable for me because of my pre-existing ulcerative colitis. She advised that she had not been able to find any examples of anyone with a condition like mine being given Ipi; she also cited examples of two of their patients who were currently in hospital, both suffering from severe colitis induced by Ipi, both on intra-veneous steroids, and one of whom they did not expect to recover from the colitis.

Weighed up against this risk was the seemingly miniscule potential chance that the drug would actually have any benefit. She explained that their typical response rate was in the region of five per cent – hardly an inspiring figure! And even then I was advised that I didn’t fit the profile of a typical ‘responder’, so my chances of gaining any significant benefit from the drug were even less than that.

In light of these factors, and after much thought, we decided to turn down Ipi as a treatment option. We felt that it posed too much of a risk to everything else we were doing in terms of our ‘integrative’ treatment approach – if I were to end up in hospital on intra-veneous steroids I wouldn’t be eating Sally’s healthy meals, wouldn’t be able to exercise, would probably have to stop taking supplements, etc.

And also very importantly, I’d only be able to see family and friends during hospital visiting hours, and my time with Saskia would be limited – there’s only so much time she would tolerate in a hospital ward (or be tolerated in a hospital ward!).

In summary, the risk of colitis and the negative impact this could have on everything else we were doing, both in terms of my ability to fight the disease and my quality of life, seemed to outweigh what looked like a very slim chance of a response. So after a lot of thought we decided to say ‘no’ to Ipi.

This was an incredibly difficult decision to make – throughout life you get used to the idea that if you get ill, you go to the doctor and they give you something to make you better. To actually walk away from a ‘conventional’ treatment option like Ipi (despite all the risks) and say ‘we are going it alone’ with diet, exercise, etc, was incredibly unnerving. Rationally we had been through all the pros and cons, and so had faith in our decision – but that didn’t seem to make it any less daunting.

——————————–

Life After Ipi

So that was it – back home from the hospital to fight this monster ourselves, with our regime of exercise, diet, relaxation, supplements, etc.

Since then life has certainly had its ups and downs.

While our integrative regime initially went well, we soon discovered the magnitude of exactly what we had taken on – fighting cancer had suddenly become a full time job. It wasn’t long before we were struggling with the time demands of shopping for and preparing fresh meals, juicing, walking, trying to fit in relaxation, etc. On top of the everyday demands of trying to manage a baby, a house, and the rest of everyday life, we found ourselves a little over-committed.

My previous treatment regime of sitting on the sofa eating scotch eggs and chicken and mushroom slices had certainly been less work, and definitely more enjoyable – although probably not offering as much towards the fight against the cancer.

While on the subject I have been amazed at the amount of admin that having cancer involves. Endless forms, e-mails between hospitals, appointment letters and planning, phone calls between hospitals, prescriptions, etc, etc. It has been truly incredible.

Fortunately just as we were reaching our wits end, we had a week long break in the Lake District, staying in a lovely cottage just outside Keswick with my Mum, Step-dad and Sister. This gave Sally and I a chance to have a bit of a rest, with all the extra pairs of hands to help look after Saskia. I personally didn’t manage to do much walking or photography, mainly due to tiredness – but we had a nice break, with plenty of good pub meals, a boat trip, and time to relax.

Unfortunately towards the end of the holiday I started to suffer with pain in my left arm (which we put down to nerve damage from the chemotherapy), and the pain in my back increased considerably, leaving me in quite a lot of discomfort. To compound matters I also started to suffer more and more from fatigue. By the time we were back home I was pretty much exhausted, and in significant discomfort if in any position other than lying on the bed.

And that has been the story up until now. The last few weeks have been very difficult – between the fatigue and back pain most days have been spent lying on the bed, in a half asleep stupor, watching endless episodes of Frasier, Futurama and the Simpsons on obscure Sky comedy channels (but not Friends, because Friends is rubbish, despite the fact that it is on ALL THE BLOODY TIME). The consensus of the doctors is that the physical and mental exhaustion is a side effect of the brain radiotherapy. I have to admit I thought I had passed the window for those side effects, but evidently not.

The consensus of those around me (ermm… mainly Sally) is that I have also been suffering from a little depression. I can’t say I was really aware of this myself at the time, but I can understand where she is coming from – it seemed to coincide with the period when I felt most mentally fatigued (obviously all that Frasier wasn’t doing a very good job of keeping my spirits up – perhaps I should have been watching Friends after all!). Looking back I can certainly say that over the last few days I have felt mentally more ‘with it’, and Sally seems happy that I am returning to my normal cheery happy-go-lucky self (actually I’m not sure she would go that far!).

Despite spending most of the last three weeks semi-comatose on the bed, an awful lot has been happening in terms of treatments and hospital appointments during that time. Last week on Friday I had radiotherapy treatments at Canterbury Hospital on my arm and back to try and help with the pain (yes, that’s right – it turns out the pain in the arm wasn’t nerve damage, but spread of the cancer to the bone in my arm). Excitingly this involved me getting my first three tattoos – they do a ‘CT planning scan’ beforehand to see the areas they need to target, and then they tattoo you in order to make sure that when they actually come to do the radiotherapy they are targeting the right place.

They give you a choice of what you want – so I went for an anchor, an England flag, and a big lions head. Obviously I am lying – all they did was tattoo three tiny dots on me. One on my arm, and two just above my trouser line, both of which I am currently too fat to be able to see without the aid of a mirror (not the arm, I can see that one – I’m not that fat, yet).

So far I think the radiotherapy has had some benefit – although like with the brain radiotherapy they tell you it can actually make the problem worse for a week or so. But so far it’s not been too bad, and I would say things have improved slightly. So I’m looking forward to next week when I should feel the full benefits.

I also have big news on further treatments – we have been to see another doctor at St Georges Hospital in Tooting, who specialises in both melanoma (among other cancers) and the immune system (anyone watching may have seen him on Newsnight on Monday and Tuesday nights). Given that I have melanoma, and an auto-immune condition, we thought he was worth a visit. So we have been to see him a couple of times, and he has prepared a new treatment plan for me, consisting of about four different medications.

After making that decision to ‘go it alone’ with the Ipi decision it is slightly strange to be back in the world of ‘conventional’ treatments, but it seems what he is offering poses significantly less risk than Ipi, and with hopefully a better chance of pay-off (although as with all these things, the typical response rates are not great). So I am due in hospital on Friday for another course of chemotherapy (but a different drug to last time).

That is assuming I can get there – today I managed to put my back out even more than previously, trying to pick up a towel from the bed, and so have spent this afternoon and evening lying on the bed, even more immobile than usual. So here’s hoping I am mobile enough on Friday to get in for treatment.

Before I finish I want to say my usual thank you to all who have sent messages of support over the period since my last blog. I know it’s been a long time, and it’s difficult for people not knowing what’s going on when I don’t write on here. And I’m sorry that recently I haven’t been replying to those messages, phone calls, etc – it’s not been because I didn’t want to, or because I don’t appreciate them – it’s just because, frankly I have been absolutely exhausted and not really up to it.

Right, I think I’ll leave it there for now. Now, can I make it to the bathroom without collapsing… tune in next time to find out.

Advertisements

16 Comments

Filed under Battle with Melanoma

16 responses to “Tattoos, Frasier, and new treatments…

  1. Dave A

    Oh Ben, I just want to hug you. X

    Ps, tattoo stuff was very funny, I laughed out loud lots.

    See you soon.
    Dave.

  2. So brilliant to hear from you again Ben. Thanks so much for the update. Sending prayers for your chemo treatment on Friday. Angels go with you both on the visible and the invisible level.
    Looking forward to the next installment.
    Blessed be. Love Steph

  3. Great to have you back on the blog! You’re right, they do show Friends, always repeats, all the time. Better stick to watching Simpsons…
    We’re all thinking of you and the family. Glad you had a great time in the Lake District, hope the weather held up! That sounds promising news regarding St Georges in Tooting, let us know how the new care plan goes. Stay strong Ben, we’re all with you. Best wishes to Saskia and Sally.
    Matt & Shelley Edge.

  4. Late stage trials and FDA approval for Zelboraf, an alternative to Ipilimumab
    http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm268241.htm
    Hope it helps, Matt & Shell

  5. Waidehi

    Oh it’s good to ‘hear’ your voice. I have been thinking of you all. Fingers crossed that your back eases off in time for Friday.

  6. june and colin

    Hello Ben,
    Thank you for sharing and getting back in touch.. I have been waiting for your update… Im sorry its been such a struggle but your a very strong guy and will get threw this!. Sometimes in life we have to deal with these walls put in front of us…You have too keep up your strength and punch right threw that wall to the other side. Which your doing right now. Im glad your keeping up with the juicing and exercise… Dont forget, about NO sugar.. believe it or not blue berrys and fruit are loaded with sugar!! Alkaline fruit only, let me give you a list..1) apricots, avocadoes, cantaloupe, cherries, currants, dates, figs, gooseberry, grapefruit, guavas,kiwis,lemons,mangos,papaya,pears,raspberries,pineapple,raisins,strawberries,watermelons…and the best alkalined veg is, artichokes, bamboo shoots, beets, broccoli, ginger, kale , kelp, leeks, cucumbers, celery, carrots, cabbage, brussel sprouts…try and buy only organic! I know its expensive but this is your medicine…. seaweed is excellent too..Dark green veg is the best., the darker the better….you want to keep your body as alkaline as much as you can, so nothing nothing can live in it….Did you know about alkalined water? very important….because water can be very acidic. You want to try and drink water at 7.5–9 ph. You can google it and research about it. I know this is alot of effort, but its worth it….:) I didnt hear about yoga? are you doing any yoga to relax? its just another part of the picture… So you dont like Friends eh? I dont either, infact i dont think i have ever watch one episode!! maybe it runs in the family?! ha Ive been watching this new show called Shark Tank…if you dont have it in England, try googling it….. Its like your show dragons den….I find it interesting how they negotiate for those businesses…watch it sometime you may like it…:) Hey if your back hurts, get a tennis ball and lay your back on it or if your driving a car, put the tennis ball on the part that hurts…its feels like someone is massaging that spot hard and usually goes away.. just alittle tip for ya…:)
    Ok buddy ben…I am here for ya and if you need to chat, write, email, text, please do it ok….have a nice day or nite , over there in Good old England..
    Your over seas connection
    colin x

  7. Janine

    What a wonderful day, the sun is shining and we finally have word from you! I guess we are amongst the lucky ones as we hear about you from Sally, but you don’t know what a relief it is to hear from you directly. Really glad to hear that the radiotherapy has had some effect with hopefully more to come. It is very positive to hear that you are pursuing some new treatment options and we keep our fingers crossed for you. All our love as always, the Pommer family XXX

  8. Lynsey

    Hi Ben. It is lovely to hear from you and thank you so much for taking the time to update us with your news. We have all been thinking about you.

    You did make me laugh when you mentioned the ‘tattoos’ – your sense of humour is nothing short of BRILLIANT!

    I want to wish you the very best of luck for your treatment on Friday.

    Lots of love to you, Sally and Saskia.

    Lynsey xx

  9. Vicky Cook

    Hey Ben

    Me and Cassie didn’t read your blog properly and have just gone out and got matching England Flag tats in your honour!!!! :0)

    Nice to hear from you we are all thinking about you at work. Take Care
    Vicky x

  10. Lindsay Macdonald

    Ben and Sally, you’re incredible! God bless x

  11. Jacqui

    Great to hear from you!! Hopefully see you very soon xxxx

  12. Becka Klinck

    As always a great blog. Good luck tomorrow – me thinks you’re overdue some good and very positive news.We’ll be thinking of you and keeping everything crossed! Always here if you need us… love the Klincks xxx

  13. Jacqui

    Hey Ben, so good to hear from you with your update. Been thinking about you a lot, so it’s great to hear how you’ve been doing.

    You are so right – Friends really is crap. If Frasier isn’t cutting the mustard, might I suggest Flight of the Conchords, if you’ve not already discovered it? Always puts a smile on my face. If you message me your address I can send you a few choice comedy DVDs 🙂

    Will be thinking of you and hoping the new treatment goes well.

    Stay strong.

    Jacqui
    X

  14. Claire Mera

    Hello Ben and Sally

    Its really lovely to hear from you – and as ever amazing to read your incredibly elegant prose! Thinking of you and very much hoping that the new treatment plan is an effective one. Good luck tomorrow!

    Claire and Miguel x

  15. Angela

    Hi Ben, like everyone else we were thrilled to hear from you again and are pleased to hear that the experts continue to recommend new treatments for you.

    No doubt Sal continues to be Superwife, Supermum, Supercook, Superstrong – just simply Super Sal! We hear lots about Saskia from her totally unbiased Grandma Austin – she really is an amazingly intelligent, entertaining and capable little girl isn’t she? (well that’s what Chris says!) I am sure she is right – would love to see another pic or two when you feel up to it.

    Will be thinking of you all tomorrow as always!

    Our love Angela and John x x

  16. Ron and Nancy Wilson

    Hi Ben,
    We were away last week but were so glad to receive your blog on Sunday.
    Definitely glad to hear that you are on new treatments. By now you must have had the first one so hope the side effects are not too bad.
    Have Gwyneth and Milly sent you any laver bread? Would it be on your diet? We have come to quite enjoy it when we are in Wales and know that something that looks and tastes like laver bread, just has to be good for us!
    Our thoughts are with you, Sally and Saskia many times each day.
    Thanks for your blogs. You do a fantastic job at writing and spreading the word of how things are going.
    We send much love to you, Sally and Saskia. xoxoxo
    Ron and Nancy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s