The best way I can think of summing up my feelings as I approach my 6th cycle of chemo later today (an event about which, up to now, I was not facing with a particularly positive attitude because of the down turn of recent days) is to copy some recent MacMillan forum correspondence with a couple of special virtual friends from overseas: Liz in Madrid and Pilla in Oslo. Together with Geraldine's constant support and an earlier consultation with the research team at St Luke's yesterday, these exchanges have lifted my spirits and put me in a much better frame of mind to press on regardless and continue taking one day at a time in the knowledge that out of the last 187 days the vast majority have been distinctly good days!
And that's the 'potential difference' between me now and me then! :o)
A post Christmas message from Liz in Madrid:Hi David. Happy New Year to you!
I hope you're not feeling too grim, it's awful feeling below par, especially when you're looking forward to a fresh kick in the teeth this week with more chemo. I suppose you're more adept at treating side effects but also have a body that is more resentful as each cycle passes. Tell me which your worse symptom is - or post on the forum - & let's see if someone can give you some advice from their experience. Patients & carers sometimes know a whole lot more than the cancer team at the hospital!
We've had a pretty emotional time of it, of course. Do you know about the uvas de la suerte? It's the tradition here that with each chime of the clock at midnight on NY Eve you eat a grape. Get them all down & you will have luck for the year to come. Pablo's 1st symptom was March 2nd '09, but on the NY Eve before, as the clock struck midnight, he got about 6 grapes down then gasped...took a big glug of Rioja...put a couple more in...grabbed a bowl & brought up a load of wine/grape mash. We all looked on aghast, thinking he was vomiting blood! Then had a bloody good laugh at the silly old codger! Life went on, more Rioja flowed, all was forgotten. It wasn't until 31.12.09, a year later, a month after Pablo's release from hospital post-op, still unable to get grapes down, that Tina remembered the events of the year before & with hindsight, of course, it was probably an early sign of something amiss down there. This NY, therefore, we brooded on this, his last one with us in a frail state, this one without him, plus all the previous years when we'd been together & had memorable times.
Bitter sweet, sad, heart-wrenching...but through it all I felt we had to go through a tough, emotional time in order to start the year afresh. So I feel stronger now, am fired up to go forward, have sooooo much to do I can't wallow in self-pity.
Thanks for asking, David. I hope you've been able to enjoy things to the full.
All the best for 2011!
Love
Liz xxx
I hope you're not feeling too grim, it's awful feeling below par, especially when you're looking forward to a fresh kick in the teeth this week with more chemo. I suppose you're more adept at treating side effects but also have a body that is more resentful as each cycle passes. Tell me which your worse symptom is - or post on the forum - & let's see if someone can give you some advice from their experience. Patients & carers sometimes know a whole lot more than the cancer team at the hospital!
We've had a pretty emotional time of it, of course. Do you know about the uvas de la suerte? It's the tradition here that with each chime of the clock at midnight on NY Eve you eat a grape. Get them all down & you will have luck for the year to come. Pablo's 1st symptom was March 2nd '09, but on the NY Eve before, as the clock struck midnight, he got about 6 grapes down then gasped...took a big glug of Rioja...put a couple more in...grabbed a bowl & brought up a load of wine/grape mash. We all looked on aghast, thinking he was vomiting blood! Then had a bloody good laugh at the silly old codger! Life went on, more Rioja flowed, all was forgotten. It wasn't until 31.12.09, a year later, a month after Pablo's release from hospital post-op, still unable to get grapes down, that Tina remembered the events of the year before & with hindsight, of course, it was probably an early sign of something amiss down there. This NY, therefore, we brooded on this, his last one with us in a frail state, this one without him, plus all the previous years when we'd been together & had memorable times.
Bitter sweet, sad, heart-wrenching...but through it all I felt we had to go through a tough, emotional time in order to start the year afresh. So I feel stronger now, am fired up to go forward, have sooooo much to do I can't wallow in self-pity.
Thanks for asking, David. I hope you've been able to enjoy things to the full.
All the best for 2011!
Love
Liz xxx
The resultant post on my (aka cybershot) Macmillan forum thread to the above suggestion by Liz:
"Thank you all for your recent kind thoughts and wishes and It's heartening to know that together we are all fighting through our individual battles in this virtual community, and helping each other when the going gets tough.I have just had a very gentle and sympathetic PM from Liz, whose husband Pablo died recently having courageously fought OC to the last, in which she sensibly asked a question which I, up until now had not verbalized: "Which is the worse symptom/effect?" Knowing that we all suffer variously from common issues I wasn't at first sure about the correct answer to this question, but, as we both realised, it would be useful to all of us if I tried to put my feelings about this into a forum post:
In my present situation, as I approach the 6th out of a total of eight cycles of review clinic followed by chemo, spread over 6 months, with a very heartening mid term review behind me, I would say that individually none of the current difficulties on their own would cause me very much concern and all can be managed with the help of the support from the professional team, family and friends. But when they combine forces to oppress and demoralise you they form a formidable opponent which after time, and from time to time, cannot fail to drag you down and make you feel quite wretched and unresourceful.
That's just about sums up how I feel about:
-The nagging, persistent chronic pain in the area between my shoulder blades and through to my sternum which roams around and becomes intermittently acute in various places; the main factor in the significant amount of lost sleep. (the latter also perpetrated by steroid intake and the sometimes over-positive mental attitude; bordering on the hyper active - that's an interesting one wouldn't you agree?)
-The constipation caused by the high dosage of pain killers; currently Tramadol.
-The nausea and sickness I am now experiencing for the very first time; since switching to Tramadol.
-The very much increased level of fatigue and anemia which really makes it difficult to cope with everything else.
-Laryngeal palsy, which, together with the aforementioned pain, I believe results from the cancer's effect on the Vagus nerve system which runs throughout the thorax.
-Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia, which causes very sore fissures in the dried out soles and palms (not to mention very brittle, and now some blackening, nails).
-Mouth ulcers come and go; gone at this time thankfully as eating is a chore enough already.
I think that's enough to be going on with and if I was given the option of ditching just one then the first on the list would be my choice. My fear is that this is going to be the hardest of the management tasks facing me at the moment. Though it is worth reiterating that everything at present has an easily attained remedy reinforced by discussions about best options during clinics.
All views and experiences on this topic would be much appreciated.
Whatever plagues you at the moment I trust you are getting all the help you can muster: We don't have to suffer unnecessarily with the resources at our disposal. If it's not happening for you or your loved ones then make a right b****y nuisance of yourself until it does.
With love and light
David [X]"
It's hard to find the words to express the gratitude sometimes when such lovely people like Liz, who is showing such fortitude in coping with her own recent bereavement, are unselfishly prepared to help, advise and support others with the insight achieved from their own suffering and anguish as patients or carers.
This is exemplified also in an exchange of messages between Bergen [Not Oslo - my apologies Pilla; and now I know why, not knowing which part of the US you are from, I refrained from making a reference to "The Yankee Abroad" ;O) ] and Yateley the day before my latest cycle of chemo on 5th Jan 2011:
Hi David, that was a cute doggy card. I liked it.
I tried to reply to your post on worst symptom, but the system got locked up. I agree with the others. I hate to see you getting down. You're right, it's the ever-changing combination of symptoms that wear at you after a while. Ed says the worst is the hyper-ness and shakes of the steroid. But another time he says the worst is the hearing loss, side effect of the Cisplatin. The 14th we get to find out what the effect of the treatment was. Fingers crossed for a home run! Ed's a big baseball fan, and has decided the cancer is a pitcher, "little c". Ed's the batter.
Good luck tomorrow with your team. I hope they find you a better solution for your pain. Remember the great midway results. As you're from England, perhaps you can think about a cricket match - they go on for a long time, and there are lots of points see sawing back and forth. I'm sure you'll win the ashes in the end!
Hugs, Pilla
My reply to Pilla:
I tried to reply to your post on worst symptom, but the system got locked up. I agree with the others. I hate to see you getting down. You're right, it's the ever-changing combination of symptoms that wear at you after a while. Ed says the worst is the hyper-ness and shakes of the steroid. But another time he says the worst is the hearing loss, side effect of the Cisplatin. The 14th we get to find out what the effect of the treatment was. Fingers crossed for a home run! Ed's a big baseball fan, and has decided the cancer is a pitcher, "little c". Ed's the batter.
Good luck tomorrow with your team. I hope they find you a better solution for your pain. Remember the great midway results. As you're from England, perhaps you can think about a cricket match - they go on for a long time, and there are lots of points see sawing back and forth. I'm sure you'll win the ashes in the end!
Hugs, Pilla
My reply to Pilla:
Hi Pilla
Thanks for putting a smile back on my face with your reference to the cricket: I am not a great fan of the game but it's always nice to put one over on the Aussies especially in this particular competition for the Ashes (they are such bad losers), and I immediately thought back to the autumn when our national rugby team did the same thing with a stupendous record breaking win over the 'Wallabies'. What really made me chuckle was; "I'm sure you'll win the ashes in the end!" So you got me in the crematorium already have you? - That's priceless lovely lady - Thanks but no plans yet for the funeral arrangements :O)
Interesting what you say about Ed's symptoms and side effects especially as I am now, after my ENT referral, officially 'deaf'; tho' G says it's very much 'selective hearing' lol. Yet a recent opticians appointment had me a few points improved on my prescription. Funny ol' world - I just put it down to old age !
I seem to have come down to earth - not so much a crash landing, but just a bit of a bumpy touch down - so not quite as hyper as previously and occasionally feeling a wee bit sorry for myself. However chemo later today (#6/8) will no doubt boost my steroid input again and I'll be up flying high with Ed again soon. Sorry to hear he finds that one of the more problematical side effects - any suggestions from your team how to remedy that situation; with the combination of both a physical and emotional slant to it?
The clinic earlier went well and my first try out (a hour or so ago) on yet another pain killer regime of Paracetamol/Diclofenac seems a vast improvement on previous schemes, especially the Tramadol, so obviously, like so much of this infernal journey, it's question of trial and error based on good comms with one's 'team'. So now (at 03.00hrs) feeling much better equipped to face that imminent cycle of chemo later today, especially if, now virtually pain free, I can get my weary a**e to bed for a few hours kip and much needed rest.
I bid you good night and please pass on my best wishes to Ed and let him know I'll have everything crossed for him for that home run on the14th.
Love and hugs backatcha
David x
As I entered the Chilworth Ward at St Lukes for the infusion of more toxic cocktails rather than heart warming mulled punches it was obvious that the Christmas back log was still flooding through (65 patients that day to process and only 35 seats available. So I was lucky to be marched in on time and with my chemo drugs timely processed reading and waiting. While Geraldine, who had fortunately booked a Reflexology theraphy session in the Fountain Centre downstairs, went off the ward rapidly filled with patients and there were no seats available for carers and relatives. I wondered what this next session had in store for me as I was beginning to find the going getting a little tough and this tough cookie was starting to find it was becoming more difficult to cope with as the cumulative effects were proving more and more persistent: The oncology nurse with 18 year's experience who was administering the treatment did remind me that the body can only take so much poison being pumped through the system even if it was doing good in some respects it was also hammering the other parts only Heineken had previously reached.
Post chemo and I am still struggling to get the pain and nausea under control with the fatigue and shocking weather dampening my resolve to get out and about in the open air with Chaka where I feel most refreshed. I am determined that this downturn in events is only temporary but afer a telecomm consulation with St Luke's today (now Thursday) even the recommended appointment with my GP to try another tach is proving troublesome to accomplish. Watch this space as I cannot afford the luxury of negative thoughts: 'Illegitimi non carborundem' s the Latin pig would say!
Thanks for putting a smile back on my face with your reference to the cricket: I am not a great fan of the game but it's always nice to put one over on the Aussies especially in this particular competition for the Ashes (they are such bad losers), and I immediately thought back to the autumn when our national rugby team did the same thing with a stupendous record breaking win over the 'Wallabies'. What really made me chuckle was; "I'm sure you'll win the ashes in the end!" So you got me in the crematorium already have you? - That's priceless lovely lady - Thanks but no plans yet for the funeral arrangements :O)
Interesting what you say about Ed's symptoms and side effects especially as I am now, after my ENT referral, officially 'deaf'; tho' G says it's very much 'selective hearing' lol. Yet a recent opticians appointment had me a few points improved on my prescription. Funny ol' world - I just put it down to old age !
I seem to have come down to earth - not so much a crash landing, but just a bit of a bumpy touch down - so not quite as hyper as previously and occasionally feeling a wee bit sorry for myself. However chemo later today (#6/8) will no doubt boost my steroid input again and I'll be up flying high with Ed again soon. Sorry to hear he finds that one of the more problematical side effects - any suggestions from your team how to remedy that situation; with the combination of both a physical and emotional slant to it?
The clinic earlier went well and my first try out (a hour or so ago) on yet another pain killer regime of Paracetamol/Diclofenac seems a vast improvement on previous schemes, especially the Tramadol, so obviously, like so much of this infernal journey, it's question of trial and error based on good comms with one's 'team'. So now (at 03.00hrs) feeling much better equipped to face that imminent cycle of chemo later today, especially if, now virtually pain free, I can get my weary a**e to bed for a few hours kip and much needed rest.
I bid you good night and please pass on my best wishes to Ed and let him know I'll have everything crossed for him for that home run on the14th.
Love and hugs backatcha
David x
As I entered the Chilworth Ward at St Lukes for the infusion of more toxic cocktails rather than heart warming mulled punches it was obvious that the Christmas back log was still flooding through (65 patients that day to process and only 35 seats available. So I was lucky to be marched in on time and with my chemo drugs timely processed reading and waiting. While Geraldine, who had fortunately booked a Reflexology theraphy session in the Fountain Centre downstairs, went off the ward rapidly filled with patients and there were no seats available for carers and relatives. I wondered what this next session had in store for me as I was beginning to find the going getting a little tough and this tough cookie was starting to find it was becoming more difficult to cope with as the cumulative effects were proving more and more persistent: The oncology nurse with 18 year's experience who was administering the treatment did remind me that the body can only take so much poison being pumped through the system even if it was doing good in some respects it was also hammering the other parts only Heineken had previously reached.
Post chemo and I am still struggling to get the pain and nausea under control with the fatigue and shocking weather dampening my resolve to get out and about in the open air with Chaka where I feel most refreshed. I am determined that this downturn in events is only temporary but afer a telecomm consulation with St Luke's today (now Thursday) even the recommended appointment with my GP to try another tach is proving troublesome to accomplish. Watch this space as I cannot afford the luxury of negative thoughts: 'Illegitimi non carborundem' s the Latin pig would say!
Hi David
ReplyDeleteHave you had a diagnosis of the shoulder pain? I suffered for years with pain around my shoulder blade which was soothed but not cured with massage. I tried visiting an osteopath and chiropractor but that made it worse.
On diagnosis with liver disease I was stunned to find that pain around the shoulder blades can relate to liver disease. Apparently an enlarged liver (or spleen, liver disease affects the spleen too) presses on nerves which are connected to nerves in the shoulder.
Pain under the left shoulder blade can be a signal that there is a problem with the stomach or in the chest.
Pain under the right shoulder blade can be a signal of gall-bladder inflammation, liver disease, or a problem with the duodenum.
Thanks for the tips Fi
ReplyDeleteWith my gall bladder removed 18 months ago and a main tumour in my oesophagus with mets in my liver, lungs, spine, stomach and neck I guess I would feel pretty hard done by if i didn't suffer all this referred pain throughout my thorax. But given the choice I would ditch the one that feels like a knife under the left shoulder blade ......LOL. Managing to keep it more or less under control with Pethidine at the moment.
with love and light
David