This topic contains 10 replies, has 8 voices, and was last updated by 
mhnevill 11 years, 5 months ago.
Hiya guys….
Unfortunately Melvin has been in hospital again. We were so happy after finding out his IgG levels had come down a little last Tuesday..from pp 55 to 37! Then on Sunday night he became in excruciating pain again with his lower back and the left side of his lower body (it was the right before)…so 999 again and in he went. I tried giving him everything we had at home before doing so but nothing at all relieved the pain. The pain team have increased the Gabapentin now to 2600mg per day (max is 3200mg) and MST from 120mg per day to 180mg and Oramorph every hour if needed 10mg. He has been fitted with a stronger spine brace and had xray and MRI. His bloods seem no worse which is great but the damage is just getting worse. We are going back on Tuesday to find out the results of the scans and until then he is just to have bed rest and take the meds. At least he is able to come home where he is more comfortable.
It just seems that this is going to be 'just the way' life is going to be! Is it???!!!!!
Hello Kerry,
I am sorry to hear that Melvin had to go to the hospital again but that is very good news about the drop in pp levels.
My husband Phil has been admitted to hospital three times since his diagnosis in May, two of these times were unexpected. The first time he had gone in for his chemo as normal and they would not let him go home as they were worried his leg could shatter at any moment due to the lytic lesions. Strangely (due to bed shortages I think) they let him out two days later but looking back that may not have been wise as he was in so much pain he couldn't climb our stairs at home and had to crawl up them. I was so scared he would hurt himself more! Five days later he was back in hospital for the planned operations on both of his legs.
The third stay in hospital was after he had a temperature of 40 for three days. We were still new to MM when this happened and had not yet read the wise advice from people like Dai on this forum. We now know that you can not wait for a temperature to pass on its own. Phil was hooked up with super strength anti biotics and able to come home a day later.
I think hospital stays, especially at the beginning while all the problems caused by MM are found and fixed, are normal. The thing to remember and what I keep telling myself, is that the doctors and nurses can help and as much as I don't want Phil to stay in hospital it is often the best place he can be so he can get the help he needs.
Best wishes to you and Melvin.
Megan
Hi Kezmel,If its any good for you guys i was diagnosed with MM in 2003 but had a Relapse in 2012 so dont give in to what MM is throwing at you,the pains are and will be our night mares but always remember to tell yor doctors and nurses exactly what your issues are so they build an on going chart of how you are coping with your medication.
I am also taking Gabapentin but mine is 300mg one three times daily,due to the Relapse that caused swollen feet and legs with neck/back pains and so far after over a month on these tablets there has been some slow but noticable improvements but obviously Melvin has other issues ,I pray the results are favourable and does not require aditional medication.
Take care.
Hi Megan – Thank you for your message.
It sounds like you have both have it tough too. I'm sorry.
I understand what you are saying about the beg of the MM journey and we are so happy and positive regarding the PP levels, it's fantastic and a step in the right direction regarding the Myeloma. However, the damage that the Myeloma has caused comes with the problems. I'm not sure if you have read my messages about the spine damage…I will just explain very briefly in case you haven't. Due to the disease, Melvin has fractures to the L3 and L4 vertebrae which he managed quite well until September when the vertebraes and pedicles (little legs) crushed and compressed the spinal cord…causing numbness and weakness in his legs and terrible nerve pain. He is now struggling with the loss of independence as he has to remain on a 'special' bed 20 hours out of 24 each day. Life has changed so so much for him and it's painful to see. We are unsure if this will be able to be corrected – at the moment there isn't a Neurosurgeon that will do an operation due to the amount of disease that remains even after 30 sessions of radiotherapy – and of course the risks that come with it.
Accepting that things won't be the same …ever or in the near future is the hardest thing to do. It's all just really really tough isn't it?
I hope this finds you both well.
Love and best wishes Kerry xxx
Hiya Wink… Thank you for your message.
You are right, it is the damage that MM causes that is the really problem! I always say that if Melv just had Cancer to accept without the disabilities that it has caused, he approach it with determination and fight with everything he had. However, as he is slowly losing 'who he is' due to no longer being able to go for a walk, work, drive, run around with the children and the dog, take a bath…even stand for more than 2 mins at a time – he is struggling to accept the changes. I am driven by him and his bravery, although I feel like I'm losing a part of him as he is weak, sad and depressed. That isn't my Melvin – he is the toughest person I know and I'm trying each and every day to lift his spirits. At the same time, he is grieving for the person he was.
I hope this finds you well…take care and best wishes. Love Kerry x x x
Hi Keznmel thanks for your reply to my recent contact to the above RE:You are undoutable a remarkable person and obvously a soul partner to Melvin,its remarkable that what ever is said in response nothing will bring him back to when you first met,but trust us we are all with you guys,you are at a cross road that will take control of whatever your plans and thoughts can cope with,and will need help to cope with the developments as they occur.
You seems such a brave and courageous person but I had tears in my heart for you guys,and dont forget as these letters has proven there are some feelings you can express because MM patience and spouces has some issues that are not commonly familar with the general public as i never heard of Myeloma until i was diagnosoed with it.
I would if possible love to know where your spouse or family is from as if he is from the West Indies,because when i was there we were not familier with this cancer.
As you said he is strugglng to accept these changes,i can uderstand because he is also a man and sometimes we strugle to accept changes especially when you have been very active,i am at present having difficulties with swollen feet and legs due to my recent Relapse,could you say what caused his walking and standing problems,and thanks for your information you provided above,very grateful.
I am and is sure everyone is wishing you and Melvin nothing but the very best for some recovery however small,so take care and remember you are at this time the sourse of energy he is looking towards and may even shouts at times but you will be rewarded when you manages what you can cope with.
Take care.
Hi Kerry
I cant imagine what Melvin is going through and how distressing and depressing it must be for both of you. I found it difficult enough to deal with the diagnosis of cancer and side effects of the treatment and fortunately did not have any problems with bones caused by myeloma. I really hope that the treatment will continue to reduce his paraproteins so the disease is not so active and that will give the possibility of surgery to alleviate the pain and spinal compression. It really is a day or not even a day but an hour at a time for you two at the moment isnt it? Let us know what they say on Tuesday when you get the results of the scans.
Wendy x
Hi both
We feel for you guys and wow feel very inadequate about what can be said that doesn't sound patronising. To be honest it's hard enough to cope with the diagnosis, without the disability that can come with it. You guys are absolutely wonderful about the way you are managing. The pps have come down in a big chunk haven't they. So that's a positive.I am confident that there will be a clever surgeon somewhere that can sort out the structural side of this….. They can do wonders and never give up faith that this can happen, as dark as the days can get :-). Sorry there's not more that I can say, but thinking of you:-)
Roll on that Melvin can get to SCT, where Colin is now.the medics can do wonderful things x
Vicki and Colin x
Hi Kerry and Melvin
Sorry it was another Hospital Dash but am pleased That you are now back Home Melvin, this MM is a bloody hatefull thing, but you are both fighting it with all the strenth you can muster keep that strenth going you two.
Love Tom "Onwards and Upwards" xx
Hi Kerry
After nearly 5 years down the line 2 sct's and 3 relapses I know exactly how Melvin is feeling. I also have bone damage and have had to modify my previously fit lifestyle due to pain issues. However I can honestly say my mind has stayed strong and focussed and that has kept me going but at times it does get hard to bare. I do hope Melvin can overcome these emotions and stay strong for you and the rest of your family. The problem is MM can and does make us feel isolated because we just can't see an end to it but we are not the only ones in all of this and we owe it to our families to stay strong for them as well as ourselves. Today I was told I'm now running out of options after my recent relapse but I will battle on. I start yet another treatment on Monday my fourth in all and I'll stay strong and see where that takes us.
Best of luck both of you and do keep fighting.
Keith.
Hi Kerry
Sorry Melvion is having such a hard time of it, and you too, as you give him such wonderful support.
Is there the possibility of another Surgeon, elsewhere, doing the operation on Melvin's spine? We have some marvellous ones at LGI (Leeds) They did the operation to remove the tumour on my spine (T10 I think) and built some racking to support it. I then had 10 shots of radiotherepy. While I was in hospital I saw some miraculous results of surgery on others.
All best wishes to you both.
Mavis x
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